The study explores medical students' attitudes towards mandatory HIV testing and disclosure, highlighting mixed opinions on the obligation to disclose HIV status for both healthcare professionals and patients. Although there is a general understanding of the importance of testing, students express fear regarding the impact of positive results on their careers and emphasize the need for education to mitigate stigma. The findings aim to inform medical ethics education and provide insights into how future doctors navigate the complexities of HIV testing and disclosure.

1. 2011; 33: e50–e56
WEB PAPER
The ethics of HIV testing and disclosure for
healthcare professionals: What do our future
doctors think?
JULIE M. AULTMAN1 & NICOLE J. BORGES2
1Northeastern Ohio Universities College of Medicine, USA,
2Wright State University Boonshoft School of Medicine, USA
Abstract
Aim: This study examined future medical professionals’
attitudes and beliefs regarding mandatory human
immunodeficiency virus
(HIV) testing and disclosure.
Method: A total of 54 US medical students were interviewed
regarding mandatory testing and disclosure of HIV status for
both
patient and health care professional populations. Interviews
were qualitatively analyzed using thematic analysis by the first
author
and verified by the second author.
Results: Medical students considered a variety of perspectives,

2. even placing themselves in the shoes of their patients or
imagining
themselves as a healthcare professional with HIV. Mixed
opinions were presented regarding the importance of HIV
testing for
students coupled with a fear about school administration
regarding HIV positive test results and the outcome of a
student’s career.
Third- and fourth-year medical students felt that there should be
no obligation to disclose one’s HIV status to patients,
colleagues,
or employers. However, most of these students did feel that
patients had an obligation to disclose their HIV status to
healthcare
professionals.
Conclusion: This study gives medical educators a glimpse into
what our future doctors think about HIV testing and disclosure,
and
how difficult it is for them to recognize that they can be
patients too, as they are conflicted by professional and personal
values.
Introduction
The overall aim of this qualitative study is to gain a deeper
understanding of future doctors’ attitudes and beliefs regarding
mandatory human immunodeficiency virus (HIV) testing and

3. disclosure, and to explore current medical students’ personal
biases and stigmas surrounding HIV testing and disclosure.
Present and future doctors may face the challenges of having
to not only request that patients disclose their HIV status, but
also to decide whether to report one’s own HIV status to
patients, colleagues, and/or employing healthcare institutions.
By examining and identifying some of the beliefs and attitudes
surrounding such dilemmas, we believe this information can
be of help to medical educators as they work with medical
students and their clinical preceptors to resolve many of the
social and ethical problems associated with the stigma of HIV
disclosure, while improving the overall health of individuals
and communities. In addition to the presentation and analysis
of our data, we provide curriculum recommendations for
ethics education for HIV testing and disclosure for medical
students. First, we will provide descriptive background infor-
mation on HIV testing and disclosure.
HIV testing

4. In the United States, there are several private and public HIV
testing sites including free-standing clinics, hospitals, state
Practice points
. Present and future healthcare professionals may face the
challenges of having to not only request that patients
disclose their HIV status, but also to decide whether to
report one’s own HIV status to patients, colleagues, and/
or employing healthcare institutions.
. Given the lack of knowledge about HIV testing, and the
problems with anonymity, patients and HCWs alike,
even when knowledgeable in HIV treatment and pre-
vention, are often reluctant to get tested for HIV out of
fear that positive test results will affect reputations,
employment status and insurance benefits.
. Differences were noted among pre-clinical students
(first- and second-year students) and clinical students
(third- and fourth-year students who have been fully
exposed to patient care) with respect to the duty to
patient care versus duty to oneself.

5. . By examining and identifying some of the beliefs and
attitudes surrounding such dilemmas, this information
can be of help to medical educators as they work with
medical students and their clinical preceptors to resolve
many of the social and ethical problems associated with
the stigma of HIV disclosure, while improving the
overall health of individuals and communities.
Correspondence: J. M. Aultman, Department of Behavioral and
Community Health Sciences, Northeastern Ohio Universities
College of Medicine
and Pharmacy, 4209 State Route 44, PO Box 95, Rootstown, OH
44272-0095, USA. Tel: 330-325-6113; fax: 330-325-5911;
email:
[email protected]
e50 ISSN 0142–159X print/ISSN 1466–187X online/11/010050–
7 � 2011 Informa UK Ltd.
DOI: 10.3109/0142159X.2011.530311
health departments, and clinician offices. Every state, along
with Guam, Puerto Rico, and the US Virgin Islands offers
confidential testing, where a person’s name is recorded with
test results, and 45 states including Guam and Puerto Rico,

6. offer anonymous testing, where no name is used or connected
to test results (Center for Disease Control 2005). In reporting
cases of HIV, almost every state uses names. Five states use
name-to-code reporting and eight states only use codes. While
it is important to test and report individuals with HIV to better
understand the spread of the disease, to develop better safety
and preventative measures, and to deliver needed healthcare
to those who are afflicted, there are several ethical concerns
about the procedures for testing and reporting. Globally, many
efforts have been made to develop surveillance and reporting
programs. For example, in 1999, a European HIV reporting
system including 39 countries of the World Health
Organization (WHO) European Region was developed for
AIDS reporting. Persons who test positive are identified in
various ways (e.g., names, codes/identification numbers) and
reported by clinicians and/or laboratory personnel depending
on the regulations of individual countries. D’Amelio et al.
revealed that 27% of the 121 countries evaluated have

7. legislative measures in place mandating HIV testing for
vulnerable populations (e.g., commercial sex workers, men
who have sex with men, injecting drug users; D’Amelio et al.
2001; Li et al. 2007). Worldwide, many individuals do not
know the differences between anonymous and confidential
testing,1 or if they are aware of mandatory testing and
reporting programs, they may refuse to get tested, realizing
with a positive result their names or identifying information
may be reported. For those individuals who are living in states
that do not give them the option for anonymity, they too are
less likely to get tested. Recently, recommendations by the
Center for Disease Control (CDC 2006) suggest that all adults
and adolescents (ages 13–64) should be given voluntary,
automatic, and routine HIV tests upon entering a healthcare
facility so as to normalize HIV screening as a routine part of
medical care. Marcia Angell argues there is a need for HIV
testing to become more routine (Angell 1991). Using an ‘‘opt-
out’’ approach, individuals may have the opportunity to

8. decline testing, but healthcare workers (HCWs) are obligated
to provide basic information about HIV, including what
positive and negative test results mean. Although these
recommendations may help to normalize the HIV screening
process, there may be no options for anonymity, which may
persuade individuals to opt-out, or even forgo medical
attention altogether out of fear of being tested without prior
consent.
Given the lack of knowledge about HIV testing, and the
problems with anonymity, patients and HCWs alike, even
when knowledgeable in HIV treatment and prevention, are
often reluctant to get tested for HIV out of fear that positive test
results will affect reputations, employment status and insur-
ance benefits. Although previous studies have critically eval-
uated both patients’ and HCWs’ perspectives regarding HIV
testing and disclosure (see, for example, Dixon-Mueller 2007;
Galletly et al. 2008; Kagan et al. 2008; Tesoriero et al. 2008),
there are few recent studies examining medical students’

9. perspectives (see e.g., Evans et al. 1993).
HIV disclosure
When tackling the issue of HIV disclosure, most studies focus
on whether patients have a duty to disclose their HIV status to
their partners and to healthcare professionals so as to acquire
needed therapies and treatments, as well as to protect
healthcare professionals from even the slightest possible
exposure. Many critics conclude that patients do have a duty
to disclose their HIV status to their partners, to anyone who
may be susceptible to HIV transmission, or to those profes-
sionals who are obligated to provide care and treatment.
Under this popular line of reasoning, supported by the CDC,
the American Medical Association, among other health orga-
nizations, a public health ethic appears to take precedent over
individual freedoms and the right to privacy. However, when
tackling the issue as to whether HCWs also have a duty to
disclose their HIV status to their patients (Perry et al. 2006),
there is little consensus as to whether disclosure is valuable,

10. especially given the low probability of transmission. In 1991,
CDC recommended that infected HCWs with HIV or Hepatitis
B should not perform exposure prone procedures unless they
have ‘‘sought council from an expert review panel and [have]
been advised under what circumstances, if any, they may
continue to perform these procedures.’’ The CDC defined an
exposure-prone procedure to include ‘‘digital palpitation of a
needle tip in a body cavity or the simultaneous presence of the
health care worker’s fingers and a needle or other sharp
instrument or object in a poorly visualized anatomic site.’’ And,
even if the panels permit them to practice, it is recommended
that HCWs must still inform patients of their serologic status
(Gostin 2000). The American Medical Association’s policy on
HIV disclosure reads, ‘‘HIV infected physicians should disclose
their HIV seropositivity to a public health officer or a local
review committee, and should refrain from doing procedures
that pose a significant risk of HIV transmission, or perform
those procedures only with the consent of the patient and the

11. permission of the local review committee.’’ Furthermore, ‘‘A
physician who has HIV disease or who is seropositive should
consult colleagues as to which activities the physician can
pursue without creating a risk to patients’’ (Blumenreich 1993).
Marcia Angell in ‘‘A Dual Approach to the AIDS Epidemic,’’
wrote that patients have a right to know whether a doctor or
nurse who performs invasive procedures is infected with HIV.
Infected HCWs should refrain from invasive procedures, or
should expect to have reasonable alternative work
(Blumenreich 1993). Nevertheless, the 1995 Clinton adminis-
tration instructed CDC to review its guidelines that arbitrarily
restrict HIV infected HCWs, which possibly lead to
discrimination.
Critics, such as American Law Professor, Gostin, have
proposed new national policies, emphasizing patient safety by
ensuring that infection control procedures are systematically
implemented in healthcare settings, which would focus on
‘‘safer systems of practice rather than excluding and stigma-

12. tizing infected healthcare workers’’ (Gostin 2000).
Furthermore, Gostin argues that while a physician may
choose to put the patient first by disclosing his or her status,
the law should not require HCWs to disclose their HIV status,
since it is an invasion of the privacy of the HCW, and a
The ethics of HIV testing and disclosure
e51
possible professional detriment to the therapeutic relationship
following such an emotional and unsettling conversation with
patients. That is, since the HIV infected HCW is also a patient,
disclosure may be embarrassing and damaging to one’s
professional reputation. Besides the fear of discrimination
and the view that disclosure is an invasion of privacy, Gostin
and others believe that since the risk of HIV transmission from
HCW to patient is too low to meet the legal standard for
disclosure, informed consent guidelines and laws should not
require HIV infected HCWs to disclose their status to patients.

13. But if disclosure may be embarrassing and damaging to a
HCWs medical career or transmission is too low to meet the
legal standard for disclosure, it would seem as though patients,
just as HCWs, should not be required to disclose their HIV
status when seeking non-invasive care, which may not be
relevant to the treatment and monitoring of HIV. Nonetheless,
healthcare professionals purport, simply for preventing harm
to self and other, the HIV status of patients should be known
regardless of the level of harm in diagnosing, monitoring, or
treating patients for related and non-related conditions and
preventative care.
In the following study, these ethical issues are tackled by
our medical student-participants – our future doctors, whose
perspectives regarding HIV testing and disclosure for both
patients and HCWs give us insight into their critical thoughts
and ethical decision-making regarding personal and patient
care, and whether guidelines such as those created by the CDC
will be followed, or ignored, by our future physicians whether

14. they practice nationally or internationally with different
guidelines and laws.
Methods
During 2006–2007, a total of nine focus groups, containing 54
volunteer student-participants (34 females and 20 males),
ranging in ages 18–26, from two, four-year medical schools in
the United States, were interviewed by the investigators of this
qualitative study. Both medical institutions have an equal ratio
of males and females enrolled (50 : 50); however, there is an
unexplainable disproportionate number of female students
who volunteered at each level of their medical education
(years 1–4). All medical students were invited to participate via
email invitations and in-person classroom announcements,
both of which included an informational sheet describing the
study and role of voluntary participants (e.g., students may
freely accept or decline participating in the study, any student
who participates may leave the study at any point). Full
institutional review board (IRB) approval was obtained prior to

15. the start of the study. Six focus groups, containing 30 first- and
second-year students (19 females and 11 males) were inter-
viewed during their non-clinical training at their respective
medical schools. Three focus groups, containing 24 third- and
fourth-year medical students (15 females and 9 males), were
interviewed during their clinical training at their respective
medical schools, with the exception of three, third-year
medical students (3 males) who were interviewed during a
psychiatry clinical rotation at a local hospital. All IRB guide-
lines and ethical procedures were followed (i.e., informed
consent). All student-participants were asked a pre-established
set of general, open-ended questions regarding mandatory
testing and disclosure of HIV status for both patient and health
care professional populations. The open-endedness of these
questions, commonly used in qualitative research, prompted
students to verbalize their interpretations of concepts (e.g.,
‘‘compulsory’’ or ‘‘mandatory’’) and freely give their opinions
on difficult, ethical and professional issues, which enabled the

16. investigators to gain data with a range of attitudes and beliefs.
The pre-established, general questions used in the recorded
interviews are as follows:
(1) Do you think medical students should be tested for
HIV? How about physicians? Other healthcare
professionals?
(2) Should HIV testing be voluntary or mandatory? Why or
why not?
(3) Do you think that patients should disclose their HIV
status to their physician?
(4) Are there any circumstances under which a patient
should not disclose this information about their health
status?
(5) If a physician has HIV, do you think he/she should
disclose this to his/her patients? Please explain why or
why not.
These pre-established questions comprise the first part of this
study; a separate set of questions focusing on current medical

17. students’ perspective on and use of universal precautions
comprise the second part of the study and findings are
reported in a separate paper titled ‘‘The ethical and pedagog-
ical effects of modeling ‘not-so-universal’ precautions’’.
Interviews for the first part of this study were conducted for
30–45 minutes, while focus group interviews for the entire
project lasted 60–75 minutes. Investigators used a hand-held,
digital audio recorder to record all interviews. Project inves-
tigators took hand-written notes during each focus group,
alerting them to significant points and patterns of experiences,
beliefs, and attitudes. All recorded interviews were transcribed.
Names and other identifiers that were verbalized by students
during the focus group sessions were not transcribed.
Transcripts were qualitatively evaluated by the project inves-
tigators individually and then collectively to ensure that
emerging themes in the data were objectively identified and
analyzed using thematic data analysis, whereby repetitive
themes emerged from students’ responses and meaning units

18. were recorded and coded. The project investigators included
the authors of this article, both of whom also conducted the
focus groups at their respective institutions; the first author
analyzed the data, and the second author verified the analysis.
Data from students’ answers (from the above questions and
discussion that followed) were divided into two significant
categories: HIV testing and HIV disclosure.
Results
In general, there were no identifiable differences in the reports
given by medical student-participants from the two medical
schools. In addition, there were no identifiable differences in
responses among males and females. However, there were
significant differences among pre-clinical students (first- and
J. M. Aultman & N. J. Borges
e52
second-year students) and clinical students (third- and fourth-
year students who have been fully exposed to patient care)

19. with respect to the duty to patient care versus duty to oneself.
Although most students expressed their personal opinions,
many students provided insightful, constructive, well-sup-
ported arguments surrounding HIV testing and disclosure,
often placing themselves in the shoes of their patients or
reflectively thinking on what it would be like to be a physician
with HIV. The focus groups conducted were useful not only
for the purposes of this study, but also for students’ medical
education by giving them an opportunity to discuss and reflect
upon a controversial topic in medicine and public health.
Specific results from this study are divided into two primary
sections, ‘‘HIV testing’’ and ‘‘HIV disclosure,’’ along with
relevant sub-sections.
HIV testing
Do you think medical students should be tested for HIV? How
about physicians? Other healthcare professionals?
In response to the first focus group question, first- and second-
year students at both medical schools reported that testing can

20. reduce the social stigma associated with HIV; by having every
student experience the testing procedures from ‘‘a patient’s
perspective’’, along with a formal education about HIV from
clinical, psychological, and social perspectives, the stigma
could be reduced and students would be better informed to
help their patients and themselves in the prevention and
treatment of HIV. The majority of students who supported HIV
testing in medical school (or when they became licensed
physicians) felt that testing for HIV is an important step toward
physically and emotionally caring for themselves and their
patients. They also recognized that attitudes and beliefs may
positively change in ways that alleviate current stigma as HIV
screening increases or becomes a normalized practice.
However, not all students supported HIV testing for medical
students and/or healthcare professionals.
A total of nine first- and second-year students at both
medical schools feared the consequences of the HIV tests.
Their greatest fear was that of the medical school or

21. administration finding out about any risk factors (drug use0
or positive test results, which, they believe, would ruin
students’ future medical careers. They expressed they would
not be valued or accepted as an HIV professional, which
interestingly, provoked students to think about what patients
may feel and think with respect to their own professional lives.
Students from both medical schools feared their privacy would
not be protected and that positive results would show up on
their permanent records. One male first-year student explained
that he would not want to get tested for incurable STDs
‘‘because of the possibility of the school finding out.’’ Other
students reported that because the transmission rate was so
small, and universal precautions were in place, there would be
no need to get tested. Twelve students at each stage in the
four-year medical school curriculum explicitly argued that only
those who are at risk for HIV should be tested, but that testing
should be voluntary regardless of the risks to patients and
colleagues. Students from both medical schools (approxi-

22. mately 75%, or 40 out of 54 clinical and non-clinical) reported
that if healthcare professionals were tested positive for HIV,
negative consequences, such as lawsuits, loss of medical
licenses, and limited patient interaction, could occur. Rather
than directly answering the focus group question, third-year
students at both medical schools were inquisitive and asked
about the benefits of knowing the results of an HIV test as it
relates to the safety and protection of others. After re-directing
their questions and answers (when dialogue got ‘‘off-track’’) by
asking how they felt about being tested as medical students,
these third-year students felt that tests should be given to
healthcare professionals only if there is a significant transmis-
sion rate from physician to patient. Two fourth-year students at
one medical school added that ‘‘testing is expensive’’ and
some people, especially medical students, may not be able to
pay for the tests. The availability and accessibility of medical
resources needed to test medical students and healthcare
professionals alike was a general concern among the fourth-

23. year students, as well as how information gained from the tests
is going to be used (e.g., will information hurt your potential to
get insurance). Overall, there was little concern regarding the
possibilities of transmission of HIV from physician to patient.
Mandatory testing
Should HIV testing be voluntary or mandatory? Why or
why not?
It was duly noted among first through third-year medical
students at both institutions that the stigma becomes reduced
when testing is mandatory. First-year students at one medical
school indicated that mandatory testing may help more people
get treatment. A first-year student at the second medical school
indicated that ‘‘if we are not disclosing information about
ourselves then I don’t think we can ask our patients to provide
the information – no double standard.’’ Another student
reported, ‘‘I think I would lean towards HIV testing be
voluntary instead of mandatory. I really value having individ-
ual rights.’’ However, another first-year student stated, ‘‘I

24. would say mandatory. It’s just like. . .like our pap smears and
we test for that annually, and it’s not stigmatized. I don’t see
why we couldn’t do the same thing with HIV. Encourage
women and men to get their annual HIV test if they, or you
know, at least every few years. . .’’
Second-year students generally thought that so long as laws
(or guidelines) were in place to protect discrimination,
healthcare professionals and students should be mandatorily
tested. A female second-year student, echoing the same
sentiment, suggested that testing be anonymous and confi-
dential if it were to be mandatory. Another second-year
student felt that one would be more likely to pay attention [to
universal precautions] if a person’s HIV status were known.
While first- and second-year students from both medical
schools indicated the stigma would be greatly reduced with
mandatory testing, third- and fourth-year students felt that
discrimination would occur and the stigma would continue to
exist, even though ‘‘HIV is no longer a death sentence.’’

25. More than half of students (63%, or 34 out of 54 clinical and
non-clinical) interviewed at both medical schools explicitly
argued that individual rights are critical. If tests were manda-
tory, the right to privacy should be upheld to protect the
The ethics of HIV testing and disclosure
e53
student or healthcare professional from negative conse-
quences, such as employment and insurance discrimination.
These students also indicated that mandatory testing would be
a waste of resources, since it is a common belief among
students and healthcare professionals that ‘‘we do not typically
engage in risky behaviors, such as unprotected sex, or fail to
use universal precautions’’.
Patient disclosure
Do you think that patients should disclose their HIV status to
their physician? Are there any circumstances under which a
patient should not disclose this information about their health

26. status?
We found that first- and second-year students (approximately
73%, or 22 out of 30 non-clinical students) expressed that
patients should disclose their HIV status to their physicians in
order to educate oneself and to prevent the possibility of a
misdiagnosis or wrong treatment regimen. A first-year student
at one medical school indicated that HIV testing is a mandatory
practice within the US military, so he has to get tested each
year that he is enrolled with the military. However, many first-
and second-year students indicated that because of the
potential for discrimination, patients should not have to
disclose their HIV status. One first-year student believed that
it is the physician’s responsibility to prevent the disease. First-
year students from both medical schools suggested that if a
physician or healthcare professional does not have to disclose
their HIV status to the patient, then the patient should not have
to disclose his or her status.
The general consensus among third- and fourth-year

27. students at both medical schools is for patients to disclose
their HIV status in order for healthcare professionals to
properly treat their patients and for properly protecting
themselves when working with HIV infected patients. Both
groups of students recognized that the stigma associated with
HIV would still exist regardless of patient disclosure. Most
third- and fourth-year students (79%, or 19 out of 24 clinical
students) articulated how transparency about one’s disease
and disease-related behaviors, or disclosure specifically, is an
important patient duty; it is the patient’s duty to protect the
healthcare professional and to seek and adhere to treatment.
Physician disclosure
If a physician has HIV, do you think he/she should disclose this
to his/her patients? Please explain why or why not.
First-year students at one medical school felt that if there is a
risk, then the physician should disclose his or her HIV status.
First- and second-year students at both medical schools
believed that it is up to the physician to disclose. One first-

28. year student at another medical school exclaimed that I am
‘‘too shocked even to imagine’’ this could happen to a
physician. Another first-year student believed that so long a
physician can practice medicine, disclosing such personal
information to a patient is acceptable. A third student believed
that disclosure should depend on the specialty of the
profession. A male second-year student at one medical
school ‘‘would feel guilty’’ if he did not disclose his HIV
status to patients.
Those first- and second-year students who believe that
physicians should not disclose their HIV status to patients
explained that ‘‘the patient is not caring for the doctor,’’ or that
it is ‘‘not professional to disclose personal things.’’ Some first-
and second-year students indicated that due to the potential
loss of clients, a physician should not disclose his or her HIV
status. A second-year student stated ‘‘if you are an HIV surgeon
you wouldn’t be making the money because you would be
limited to only surgeries that involve only HIV patients.’’

29. One third-year student suggested that physicians disclose
their status in order to send the message to patients that they
too need to take precautions. Another third-year student
reported ‘‘We need to learn personal responsibility not just
with universal precautions but with whatever status we have.’’
A fourth-year student at one medical school placed himself in
the shoes of his patients and reported, ‘‘If I was a patient, I
would want to know no matter what kind of doctor [was
treating me].’’ Six students questioned why even discuss HIV
as a threat, since the threat is so slim and prophylaxis is
available. Knowing hepatitis was a greater threat, these
students could not understand why HIV is still an issue.
Three out of 10 fourth-year medical students believe the
patient has a right to know. The majority of third- and fourth-
year students believe that disclosure will not help the
healthcare professional or his or her patients, since the risk
of transmission is very slim.
Discussion

30. In this study, we explored how medical students feel about
HIV testing and disclosure, and sought to understand some of
the dilemmas they may face as future healthcare professionals.
Due to the qualitative nature of this study (i.e., using open-
ended questions in a focus group format), our medical student-
participants considered a variety of perspectives, even placing
themselves in the shoes of their patients or imagining
themselves as a healthcare professional with HIV. Regarding
duty to patients versus duty to oneself, when placed in the
physician’s shoes, third- and fourth-year medical students
consider the consequences (to themselves) more than patient
care, but emphasized patient obligations and responsibilities in
being transparent about their disease and disease-related
lifestyles and behaviors. First- and second-year students
emphasized the importance of testing to provide better care
to patients; they placed themselves in their patient’s shoes, and
were more empathetic to the emotional and social needs of
patients compared to the third- and fourth-year students. The

31. investigators attribute this difference to the lack of clinical
training among first- and second-year students, who are
idealistic in providing good care to patients and have not
(yet) developed jaded or cynical attitudes, which we witness in
more clinically-oriented students, interns, and residents. Also,
third- and fourth-year students generally have more exposure
to the business and legal practices related to medicine, and
confront justice issues such as resource allocation and avail-
ability (one reason why these students may have considered
the cost of compulsory testing).
J. M. Aultman & N. J. Borges
e54
Some students describe their unresolved conflicts between
their personal freedoms and professional obligations. For
example, medical student-participants, in identifying one of
the core ethical dilemmas of HIV testing and disclosure, report
that anonymity is important in the preservation of privacy and

32. personal freedom, but question how these values should be
balanced against the greater good of society. These ethical
issues are tackled by our medical student-participants – our
future doctors, whose perspectives regarding HIV testing and
disclosure for both patients and HCWs give us insight into their
critical thoughts and ethical decision-making regarding per-
sonal and patient care, and whether guidelines such as those
created by the CDC will be followed, or ignored, by our future
physicians. Mixed opinions were presented regarding the
importance of HIV testing for students coupled with a fear
about school administration regarding HIV positive test results
and the outcome of a student’s career.
Regarding HIV disclosure, some of our medical student-
participants recalled the case of Dr. David J. Acer, an American
dentist who was believed to have infected his patients with
HIV in the late 1980s, but immediately dismissed this case,
since accidental transmission of HIV from doctor to patient
was never proven (Tuboku-Metzger et al. 2005). Given the

33. lack of evidence showing a risk of transmission from a HCW to
a patient, our third- and fourth-year medical students felt that
because the risk was so slim, there should be no obligation to
disclose one’s HIV status to patients, colleagues, or employers.
However, most of these students did feel that patients had an
obligation to disclose their HIV status to healthcare profes-
sionals due to a greater risk of transmission.
Many physicians, in general, feel the most essential thing in
life is to continue practicing medicine and that disclosing their
HIV status would have negative outcomes, including perma-
nent loss of employment (Gerberding 1996; Fost 2000; Gostin
2000, 2002; LeBlanc 2002; Weiss et al. 2005). Based on our
collected data, many of the medical students interviewed were
also afraid of the possible negative outcomes for disclosing
such a highly stigmatized disease. However, some students,
especially those in the early stages of their medical training,
thought that some of these negative outcomes could be
prevented if medical students are tested before making career

34. decisions that could affect themselves and their future patients
(e.g., choosing to practice psychiatry instead of surgery). A few
medical student-participants thought that HIV disclosure could
benefit the therapeutic relationship, others thought patients
should not be privy to HCWs personal information, but that
employers should be made aware so as to monitor safety
practices. Some physicians, who have disclosed their HIV
status to their department chairs or others in authoritative
positions, felt a sense of relief and were able to practice
medicine without stigmatization and discrimination, and with-
out affecting patient care. For example, one Chicago psychi-
atrist explained, ‘‘I felt that though completely asymptomatic,
informing my department heads that I was HIV sero-positive
was the only way to keep work related stress at more
manageable levels . . . I only share the information about my
being HIVþ during the course of treatment when a patient
clearly needs the example of a role model and slow progressor
living productively with HIV to provide a contrast to their

35. hopelessness regarding their own diagnosis.’’ (Shernoff 1996).
In closing, this study helps medical educators understand
students’ mindset, opinions, and beliefs about HIV testing and
disclosure. For those medical schools who already have this
topic integrated into their ethics curriculum, their faculty may
want to compare and contrast the goals and objectives for their
lectures and courses with the depth and breadth of perspec-
tives shared by students in this study. For schools where this is
not currently an ethics topic, we encourage their faculty to
derive innovative methods for exploring students thinking
about and discussing these issues, especially the effects of HIV
on the healthcare professional as patient. Learning opportu-
nities should be provided to medical students across the
curriculum to address the dilemmas regarding HIV testing and
disclosure as it is important to self-care of physicians, patient
care, and to the practice of medicine. It is important that
medical educators create safe forums for students to discuss
their perspectives, feelings, and attitudes surrounding HIV

36. testing and disclosure, and to provide up-to-date information
regarding HIV transmission and rules governing when and
how to report possible transmission (e.g., needle sticks).
Furthermore, medical education should recognize the need to
teach students about caring for themselves in addition to
caring for patients. Most of our students participating in this
study had not thought about how their own health, or absence
of health, could affect patient care and their career choices as
physicians. By educating students about their own personal
health and well-being, we as medical educators have the
power to change the clinical environment, guiding our
students to become more professionally and personally
responsible for themselves and their patients, to seek help
and guidance without fear (e.g., to report a needle stick
without fear of being reprimanded by superiors), and to
recognize that disclosure in some instances is a moral
obligation to both patient and self. Although the sample size
was small, and the context of pre-clinical and clinical training

37. provided needed support in understanding the possible
differences among these student groups, this study gives
medical education a glimpse into what our future doctors think
about HIV testing and disclosure, and how difficult it is for
them to recognize that they can be patients too, conflicted by
professional and personal values and fearful of the conse-
quences in their professional lives. Medical education needs to
acknowledge that our future doctors may be or become
patients with a highly stigmatized disease, to create an
environment that neither discriminates patient nor profes-
sional, and to guide students in recognizing and resolving
conflicting personal and professional values and interests.
Declaration of interest: The authors report no conflicts of
interest. The authors alone are responsible for the content and
writing of this article.
Note
1. Anonymous testing uses code numbers to identify your test.
Your name is never used. You use the code to get your results.

38. The ethics of HIV testing and disclosure
e55
You are the only person who knows your results. With
anonymous testing, you have complete control in deciding
who to tell and when. With confidential testing, your name is
recorded and linked to your test results. Even though this
information is kept private, others may have access to this
information, including health care providers, your insurance
company, and the health department.
Notes on contributors
JULIE M. AULTMAN, PhD, is a Bioethicist and an Associate
Professor of
Behavioral Sciences at Northeastern Ohio Universities College
of Medicine
and Pharmacy.
NICOLE J. BORGES, PhD, is an Associate Professor in the
Department of
Community Health and Assistant Dean, Medical Education
Research and

39. Evaluation in the Office of Academic Affairs at the Boonshoft
School of
Medicine at Wright State University.
References
Angell M. 1991. A dual approach to the AIDS epidemic. New
Engl J Med
324:1498–1500.
Blumenreich GA. 1993 [Internet]. The law and the AIDS-
infected healthcare
worker. American Medical Association Legal Briefs. Available
from:
http://www.aana.com/Resources.aspx?ucNavMenu_TSMenuTarg
etID=54
&ucNavMenu_TSMenuTargetType=4&ucNavMenu_TSMenuID=
6&id=
2411&
Center for Disease Control 2005 [Internet]. Current Status of
HIV Infection
Surveillance, January 2005. [Accessed 2008 November 11].
Available
from: http://www.hhs.gov/asl/testify/t050623a.html
Center for Disease Control 2006 [Internet]. MMWR Reports.
55(RR14):1–17.

40. [Accessed 2008 November 11]. Available from:
http://www.cdc.gov/
mmwr/preview/mmwrhtml/rr5514a1.htm?s_cid=
D’Amelio R, Tuerlings E, Perito O, Biselli R, Natalicchio S,
Kingma S. 2001.
A global review of legislation on HIV/AIDS: The issue of HIV
testing.
JAIDS 28:173–179.
Dixon-Mueller R. 2007. The sexual ethics of HIV testing and
the rights and
responsibilities of partners. Stud Fam Plann 38:284–296.
Evans JK, Bingham JS, Prat K, Carne CA. 1993. Attitudes of
medical students
to HIV and AIDS. Genitourin Med 69(5):377–380.
Fost N. 2000. Patient access to information on clinicians
infected with
blood-borne pathogens. J Am Med Assoc 284:1696–1698.
Galletly CL, Pinkerton SD, Petroll AE. 2008. CDC
recommendations for opt-
out testing and reactions to unanticipated HIV diagnoses. AIDS
Patient
Care STDS 22:189–193.

41. Gerberding JL. 1996. The infected healthcare provider. New
Engl J Med
334:594–595.
Gostin LA. 2000. Proposed national policy on health care
workers living
with HIV/AIDS and other blood-borne pathogens. J Am Med
Assoc
284:1965–1970.
Gostin LA. 2002. Rights and duties of HIV infected health care
profes-
sionals. Health Care Anal 10:67–85.
Kagan I, Ovadia KL, Kaneti T. 2008. Physicians’ and nurses’
views on
infected health care workers. Nurs Ethics 15:573–585.
LeBlanc B. 2002 [Internet]. Does the duty to disclose include
personal
disclosure by professionals? Professional practice and liability
on the
net, 4(1). [Accessed 2008 November 11]. Available from: http://
www.sml-law.com/publications/newsletters-
detail.asp?DocID=2326
Li L, Wu Z, Wu S, Lee SJ, Rotheram-Borus MJ, Detels R, Jia

42. M, Sun S. 2007.
Mandatory HIV testing in China: The perception of health-care
providers. Int J STD AIDS 18(7):476–481.
Perry JL, Pearson RD, Jagger J. 2006. Infected health care
workers and
patient safety: A double standard. Am J Infect Control 34:313–
319.
Shernoff M. 1996. Physicians living with HIV/AIDS. J Int
Assoc Physicians
AIDS Care 2(11). [Accessed 2008 November 13]. Available
from: http://
www.thebody.com/content/art2467.html
Tesoriero JM, Battles HB, Heavner K, Leung SY, Nemeth C,
Pulver W,
Birkhead GS. 2008. The effect of name-reporting and partner
notifica-
tion on HIV testing in New York state. Am J Public Health
98:728–735.
Tuboku-Metzger J, Chiarello L, Sinkowitz-Cochran RL, Casano-
Dickerson A,
Cardo D. 2005. Public attitudes and opinions toward physicians
and
dentists infected with bloodborne viruses: Results of a national

43. survey.
Am J Infect Control 33:299–303.
Weiss ES, Makary MA, Wang T, Syin D, Pronovost PJ, Chang
D, Cornwell
EE. 2005. Prevalence of blood-borne pathogens in an urban,
university-
based general surgical practice. Ann Surg 241:803–319.
J. M. Aultman & N. J. Borges
e56
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Innovation - The European Journal of Social Science Research
Vol. 24, Nos. 1-2, March-June 2011, 199-208
GENERAL ARTICLE
Changing methods of disclosure. Literature review of disclosure

44. to children with terminal illnesses, including HIV
G. Anita Heeren*
Center for Health Behavior and Communication Research,
School of Medicine, University of Pennsylvania, Philadelphia,
Pennsylvania, USA
(Received 13 December 2010; final version received 22
December 2010)
More than 30 years after the first discovery of the deadly HIV
virus, and in the wake of increased knowledge of transmission,
treatment and behavioral inter- vention development, parents
are still faced with the difficult task of whether, when and how
to inform their child about her or his HIV status. Except for
some general ethical considerations, there are no national or
international guidelines available for handling HIV status
disclosure to a child by parents and health professionals. Most
studies on disclosure address the problem of stigma and the
barriers to disclosure of HIV-positive status by adults to their
sexual partners, caretakers, families and communities, but very
few studies focus on disclosure to HIV-positive children. The
majority of the studies that address disclosure to children limit
themselves to stipulating reasons for barriers to such disclosure
instead of the skills and knowledge necessary for effective
disclosure to a child. Increasing availability of therapy for HIV
across the world presses the issue of disclosure to the child.
Even so, disclosure for children who are HIV-positive due to
vertical transmission continues to be very difficult. There is a
lack of interventions that consider guidelines for healthcare
professionals, parents or persons involved with taking care of
HIV-positive children. These interventions should be designed
in an understanding manner towards the culture where they
might be implemented and be as appropriate in the view of
integrating different family structures and the child’s
development.
Keywords: HIV vertical transmission; disclosure; child; parent;

45. stigma
Introduction
It is estimated worldwide that 2.1 million children younger than
15 years of age are living with HIV. Of these 1.8 million
children are living in Sub-Saharan Africa. The number of newly
infected children worldwide is estimated to be 430 000, with an
estimated number of 390 000 children living in the Sub-Saharan
African countries. Over 7400 new HIV infections arose on a day
in 2008. More than 97% were in low- and middle-income
countries and about 1200 cases of infections were in children
under 15 years of age. Approximately 6200 were in adults aged
15 years and older, of whom almost 48% were women and about
40% were young people aged 15-24 years of age (UNAIDS
2009).
South Africa is experiencing one of the largest HIV epidemics
in the world. In
2006 about 29.1% of pregnant women attending government
antenatal clinics were
*Email: [email protected]
ISSN 1351-1610 print/ISSN 1469-8412 online
# 2011 Interdisciplinary Centre for Comparative Research in the
Social Sciences and ICCR Foundation DOI:
10.1080/13511610.2011.553506
http://www.informaworld.com
HIV-positive (National Department of Health, South Africa
2008). Vertical transmission has resulted in a large burden of
pediatric HIV disease and the reversal of gains achieved in
reducing child mortality (Horwood et al. 2010). In South Africa,
HIV causes over 40% of child deaths (Bradshaw et al., 2003).
HIV-related illness and deaths have had a devastating effect on

46. households and communities (Hosegood et al. 2007). Despite
the introduction of interventions to prevent mother to child
transmission of HIV (PMTCT), high vertical transmission rates
have been reported (Rollins et al. 2007). Although anti-
retroviral treatment is now available, only 61% of the estimated
94 000 children in need have received treatment (UNICEF 2008,
Orne- Gliemann et al. 2008).
Methodology
This review paper focuses on the published literature
concerning the problematic of disclosure to HIV-positive
children. I searched for the keywords ‘‘HIV’’, ‘‘positive’’,
‘‘vertical transmission’’, ‘‘disclosure’’ and ‘‘children’’, using
Pub-Med and the Gateway Library from 1970 to 2010. I
compared the results between first- and third-world countries
with the main focus on Sub-Saharan Africa.
Historical overview
Since the beginning of the 1970s there have been some positive
changes in regards to disclosure towards the terminally sick
child (Bluebond-Langner 1978, Instone 2000). Before the 1970s
it was believed that children would not understand the meaning
of a serious illness and death, because of their young age
(Spinetta 1980, Claflin and Barbarin 1991), and in most
instances they were not talked to directly. It was believed the
child needed to be protected against any harmful information.
Today it is widely accepted that disclosing to the child as early
as possible is better for the child’s development and increases
survival rates and cooperation from children (Gaylin and
Macklin 1982, Waechter 1973). Before the 1980s the main
subject of disclosure to children was cancer, which raises
different questions from the diagnosis of HIV (Spinetta and
Maloney 1975, 1978, Nagler et al. 1995, Schulte 2002). HIV
affects all age groups, from infants to old people (Bibace and

47. Walsh 1980, Turner et al. 1996, UNAIDS 2009). Following the
introduction of anti-viral therapy in the early 1990s, people are
surviving longer and children who are born HIV-positive can,
taking into consideration the availability of treatment
and medial adherence, lead a successful life (Domek
2010, Bachanas et al. 2001, Battles and Wiener 2002). As
treatment expands to HIV-infected children, health
professionals and parents, in most cases the HIV-positive
mother or the caregivers of the children, are increasingly faced
with the task of disclosing to the child (Wiener et al. 1998).
HIV-infected children under medical care are seldom informed
of their HIV-status, despite some evidence from industrialized
countries indicating that disclosure might have positive
psychosocial and clinical outcomes (Bachanas et al. 2001,
Wiener et al. 1998). Studies conducted in industrialized nations
indi- cate that the proportion of HIV-infected children who have
not had their HIV status disclosed ranges in the US from 25 to
45% (Cohen et al. 1997, Mellins et al. 2002, Nehring et al.
2000, Wiener et al. 1998), is as high as 75-82% in Europe
(Funck-Brentano et al. 1997, Lwin and Melvin 2001, Thorne et
al. 2000, No¨ stlinger and Colebunders 2006) and is 29% in
Uganda (Bikaako-Kajura et al., 2006). In the
(
200
G.A. Heeren
)
(
Innovation
-
The European Journal of Social Science Research
201
)
industrialized countries disclosure is influenced by the age of

48. the child, its cognitive development, perceived right to know
(Lester et al. 2002a, 2002b, Nehring et al. 2000), deteriorating
health status or questioning by the child. In the developing
countries disclosure is more often determined by concerns about
adherence to treatment, the level of cognitive development and
age. In general, disclosure across cultures seems to be
determined by the age of the child and the desire to protect the
child against harmful information.
Ethical considerations
Because there are as yet no clear guidelines on how to discuss
or disclose HIV status with an infected child, the consequences
of full disclosure to the child have not clearly been examined.
Studies differ as to whether a higher incidence of psychological
and behavioral problems occurs among children who have not
been told about their diagnosis vs. children who have been
formally told. There are difficulties around the issue of how to
talk to the child and what should be said, in addition to who
should talk to the child. The dilemma also occurs if the parent
refuses to tell the child that he or she is HIV-positive out of
fear of how the child might react or what the child might say, or
that the child might talk to others, which might lead to gossip.
Another reason is fear of blame, or stigma and isolation. The
health professional might respect the parents’ wish not to
inform the child despite knowing that the child has become
sexually active. The ethical responsibility is questionable for
either side (Kietzman 2008).
The doctor-patient ratio is much higher in developed countries
than in developing countries. Therefore, the issue of disclosure
might be handled differently
in different parts of the world. In the Western world, with
sufficient medical professionals, psychologists and social
workers, there is more time to spend with a single patient than
in the developing countries, where there is a lack of health
professionals. The disclosure process might very often be

49. processed by a specially trained nurse rather than a doctor and
is less likely to be accompanied by a psychologist.
Since more children will be born who are HIV-positive, it is
crucial that guidelines are developed for concepts on how to
disclose, not only for health professionals but also to assist
parents and caretakers. This is important because they live with
the child and have daily contact with her or him. In countries
with less medical resources and fewer health professionals, it
might not be practical for medical doctors to take the time
needed to appropriately disclose to the child. Guidelines for
health professionals and parents on how and when to disclose
are urgently needed (Kietzman 2008).
Informed by whom?
One question that seems to play an important role in Western
society concerns who should inform the child. Typically
clinicians have assumed the responsibility of informing the
child about the disease, believing that they have the right to do
so because they have the knowledge (Kietzman 2008). This
assumption has been questioned in Africa, where most parents
and caretakers believe that they are the best person to talk to the
child (Wiener 1996, Lester et al. 2002a, 2002b, Moodley et al.
2006, Lesch et al. 2007). In this context, therefore, the parent
should be an important
target for guidance about the disease, infection, transmission,
diagnosis, symptoms and treatment. Without this combination of
knowledge and skill, the parent can feel disempowered and
refuse to talk to the child while the child might be getting older
and engaging in risky sexual activities without knowing the
risks. As a consequence, the uninformed child may unknowingly
infect others (Kietzman 2008). Interventions in Southern Africa
should, therefore, focus on empowering the parents, in addition
to health professionals, in order to more effectively affect the

50. behavior of HIV- positive children.
Age of child
At the beginning of the 1990s the question was no longer
whether the child should be told, but rather ‘‘how and when
should the child be told’’ (Lester et al. 2002a, 2002b, Kietzman
2008). Very often parents try to prevent the child from learning
the diagnosis of HIV. Most parents delay disclosure until the
age of around 10 years and prefer not to use the term HIV or
AIDS in the presence of the child. About 50% of parents believe
that disclosure should occur before the age of 12 (Blasini et al.
2004). The researchers argue that providing such information as
early as possible is critical for the development of the child and
that requisite programs need to be developed that are age-
appropriate for the child.
Reasons and barriers to disclosure
Domek (2010) examines reasons for disclosure and non-
disclosure as well as the benefit of both. Domek suggests that it
is important to understand the major barriers to disclosure and
the fear associated with disclosure in order to develop
appropriate guidelines to prepare the HIV-positive child for the
future. In this regard it might be useful to have a multi-
professional team to assist the caregiver by adapting the
disclosure discussion in order to meet the developmental phases
of the child.
I found only five publications by authors published in
Sub-Saharan Africa studies (Abad´ıa-Barrero and Larusso
2006, Bikaako-Kajura et al. 2006, Kouyoumdjian et al. 2005,
Myer et al. 2006, Oberdorfer et al., 2006). They try to better
understand the problematic issues around disclosure to an HIV-
positive child (Flanagan-Klygis et al. 2001).
Most studies do not specify the mode of pediatric HIV
acquisition (Vaz et al. 2008, Kouyoumdjian et al. 2005, Myer et

51. al. 2006). In South Africa, one study conducted using semi-
structured interviews with 40 health professionals found that
50% had talked to the patients, but only 18% were involved in
the disclosure with the child. The health professionals believed
that disclosure should start before the children were attending
school and that children would be able to understand the
meaning of their infection around the age of 10. They felt that
the best person to tell the child would be the parent or
caretaker, who should be supported by a health professional
with biomedical information. They felt that there was a need for
emotional support for the parents and their children (Myer et al.
2006).
Kouyoumdjian et al. (2005) explored in a South African study
the reasons for disclosure or non-disclosure among parents or
caregivers. Seventeen parents and caregivers participated in
focus group discussions. Some of the reasons for non-
disclosure were identified, including: fear of stigma, which
often leads to discrimina-
tion, social rejection and isolation for the child; fear of being
judged by the child; not having enough information to explain
the diagnosis or answer questions; the perception that the child
is too young to understand and might tell others; and disclosure
being seen as an emotional and/or psychological challenge for
the parent or the caregiver.
In Congo, Vaz et al. (2008), conducted semi-structured
interviews with 19 youth and 21 caregivers. The youth had been
informed about their status and the caregivers had disclosed to
their children. The youth were an average of 15 years old at the
time of disclosure. They felt that it was best to know their
status because they were then able to understand why they
needed to take medication. For most of them it was necessary to
lead a healthy and better life. It was felt that there was a need to
assist the parent and the child to understand the disease better
to be able to protect themselves and others and to stay healthy.

52. The researchers suggested that programs needed to be developed
for the population and should address the psychosocial needs of
both the children and the caregivers.
Vaz et al. (2010) report in another study the results of
interviews with eight caregiver-child dyads in Kinshasa, Congo.
All of the children had previously been informed about their
status and they ranged in ages between 8 and 17 years. Their
caregivers had informed all but one child. From the viewpoint
of the children, they were never talked to directly by their
health professional, only by their caregivers. The children
reported that in most cases they had been told that they suffered
from malaria, rather than HIV. The actual disclosure seemed to
have happened at a one time rather than over time and
appropriate to the age of the child. The children were left alone
with their fear and not informed about the disease and the
meaning of adherence to treatment (Vaz et al. 2010).
Stigma
One of the many reasons why disclosure is such a problem in
African society is stigma. Stigma is associated with risky
behavior having led to infection, which is considered avoidable
(Schulte 2002, Maman et al. 2009). Unfortunately this is linked
to behaviors such as drug use, promiscuity, homosexuality and
transactional sex (Simbayi et al. 2007). The fear of stigma is
very real in African society since it influences people’s
behavior towards others, including gossiping and attaching
negative terms to the person (Sherman et al. 2000, Uys et al.
2005).
One of the barriers to informing the child that it is HIV-positive
is the fear that the child might tell others such as friends,
neighbors or people at the school. This would most likely result
in stigma for the family or caregiver. This is especially the case
when the parent is HIV-positive, and also depends on the stage
of the disease of the parent, which determines their ability to
talk to the child (Gaylin and Macklin 1982, Wiener et al. 1998,

53. Gerson et al. 2001, Visser et al. 2008, Horwood et al. 2010).
Most of the time the health professionals and parents prefer to
prevent any direct conversation about the disease with the child
(Vaz et al. 2010). The parents may fear that the child might
conclude that he or she had done something wrong or that it
must be the fault of the parent that the child is HIV-positive.
HIV-positive mothers often feel guilty that they did not protect
the child against infection. Moodley et al. (2006) comes to the
conclusion that guidelines are needed for healthcare profes-
sionals and parents to assist the parents and guide the children.
Corneli et al. (2009) conducted a study in Congo; they
interviewed 19 youth, 36 parents and caregivers and 17 health
professionals about the role of disclosure. All participants knew
their status, and they believed that most youth wanted to be
informed about their status to protect themselves and not to
transmit the illness to others. They also felt that it made it
easier for them to adhere to medication, knowing and
understanding the disease. The parents felt that the child had the
right to know. In this group, the age of the usual disclosure was
between 11 and 15 years. They thought that more information
needed to be carefully designed to help children learn their
status. The greatest fear was that the child would respond with
depression, sadness, worry and fear of death.
Nam et al. (2009) interviewed 32 people, of whom 21 were
parents, in Botswana, aged around 37 years and their children,
aged 5-18 (those aged B5 years were not included) about their
reasons for disclosure and non-disclosure. The main reason for
the parent to disclose was their own HIV-positive status and
when they became sick.
The reaction of the children was generally supportive. The
reason for non-disclosure was the age of the child, the fear that
it would be too painful and the fear of stigma. Generally, sexual
health would not be discussed with the parent as it was seen as
inappropriate. The suggestion was made that intervention was

54. needed to assist parents and that these interventions needed to
be culturally appropriate. No intervention or other
developments were suggested.
Campbell et al. (2005) conducted a case study in South Africa;
they interviewed 44 people and additionally held focus group
sessions. They also used diaries. The main problem mentioned
with regard to disclosure was the fear of stigma: this is
connected with sex, sin and immorality. Some mothers said: ‘‘I
have an evil child in the house’’. Sick family members would
hide. The main problem was still that people died from anything
else but AIDS. They understood that the main problem lay in
intergenerational communication. The solution they saw was
further education and communication within the community. No
concept was offered.
Moodley et al. (2006) conducted semi-structured interviews in
South Africa with 174 parents; the mean age of the participants
was 33 (17-73), 91% were female and 176 were children aged
about 11. The parents believed that the best age to disclose
would be around 12 years of age. The parents believed strongly
that the child has the ‘‘right to know’’. Some 83% of the
participants believed that the parent or caregiver is the best
person to disclose, with only 16% feeling that the healthcare
provider should tell the child. Generally they would have liked
to see doctors being involved in the process of disclosure, but
understood that the lack of time did not allow this. There was a
general fear that the child would discuss the infection with
people outside the family. No program was developed or
suggested.
Lesch et al. (2007) examined the South African literature, which
focused on pediatric disclosure by health professionals vs.
parents. The health professionals supported disclosure over
several steps. They saw it as unethical when non-disclosure is
chosen. Conversely, most parents wanted to protect their child
against painful information and often supported partial
disclosure. The reason for non-disclosure was generally given
as fear of stigma and accidental disclosure.

55. Intervention studies
There is a dearth of research describing the development and
evaluation of interventions to facilitate disclosure. The only
published disclosure model we found
was by Blasini et al. (2004). They evaluated a disclosure model
for pediatric patients living with HIV in Puerto Rico. In this
model 16 health professionals, 39 parents and caregivers and 40
children participated. The group of researchers, a
multidisciplinary scientific team, developed first semi-
structured interviews and from these results designed an
intervention, which was led with structured interviews.
With these results they developed an intervention to address
many of the barriers to open communication about pediatric
HIV. Their five-step intervention targeting providers,
caregivers, and HIV-positive children involves:
(1) training sessions for health professionals in developmentally
appropriate disclosure;
(2) caregiver educational sessions and peer support groups;
(3) child assessment sessions throughout the process;
(4) combined family and staff disclosure sessions; and
(5) post-disclosure family groups for education and support.
The researchers took into consideration the following important
issues in their intervention development:
(1) age and development of the child;
(2) cultural factors that influence communication as well as
concepts of illness and death;
(3) family variables;
(4) quantity and quality of social support;
(5) mental health; and
(6) a child’s neurological and cognitive functioning.

56. The investigators reported that their intervention model
promotes healthy psycho- logical adjustment and better
adherence in children. Six months follow-up, post- disclosure,
70% of the participating youths endorsed feeling ‘‘normal’’ and
parents and caregivers reported that approximately 58% had
improved adherence. Although the majority of youths (85%)
and caregivers (97%) thought the disclosure was a positive
event, and many youth felt more supported by parents (58%),
grand- parents (48%), clinic staff (48%) and others as a result
of the intervention, there was not a comparison group with
which to measure these results.
Discussion
In summarizing the review of the literature one can conclude
that most studies are reports on what has been done. These are
mainly focus group sessions and semi-structured interviews. No
intervention concept has been developed on how to disclose to a
child. In the industrialized world, the impression is that the
clinicians have the best answer to the problem and should be the
persons to talk to the child, because they have the best
knowledge about the clinical development of the disease. In
African society the parent or the caretaker is seen as the best
person to tell the child. The parent might ask a health
professional for assistance with the disclosure, but the first
person should always be the parent. Guidelines should be
developed for disclosure for health professionals, parents and
caregivers. Studies have shown that children who know their
status develop with fewer problems and have a better
understanding of why they have to take medicine. Adherence is
much higher among these children (Wiener et al. 1998). Many
parents also argue that the child has a right to know and needs
to be encouraged to lead a normal life, and to be able to protect

57. him- or herself in the future (Corneli et al. 2009). An
intervention needs to focus on the benefit and the welfare of the
child and the goal needs to be to have an understanding of what
is best for the child. Programs need to consider the cultural
circumstances, and the abilities and developmental stages of the
child and the parent. Perhaps the best question to guide those
interested in developing the guidelines that we are here
proposing is: ‘‘How can we learn to see through the eyes of the
child? How can we learn how children feel and think?’’
Suggestions for disclosure for the child could be developing
guidelines for health professionals to assist parents in the steps
to disclose to the child. This cannot be a single step and needs
to be age- appropriate, considering the development of the child
and the skill level of the parents and caregivers. On the other
hand the child should be part of the
development since it is the child we have to lead into a positive
future.
References
Abad´ıa-Barrero, C.E. and Larusso, M.D., 2006. The disclosure
model versus a developmental illness experience model for
children and adolescents living with HIV/AIDS in Sa˜o Paulo,
Brazil. AIDS patient care STDS, 20 (1), 36-43.
Arun, S., Singh, A.K., Lodha, R., and Kabra, S.K., 2009.
Disclosure of the HIV infection status in children. Indian
journal of pediatrics, 76 (8), 805-808.
Bachanas, P.J., et al., 2001. Predictors of psychological
adjustment in school-age children infected with HIV. Journal of
pediatric psychology, 26, 343-352.
Battles, H.B. and Wiener, L.S., 2002. From adolescence through
young adulthood: psychological adjustment associated with
long-term survival of HIV. Journal of adolescent health, 30,
161-168.
Bibace, R. and Walsh, M.E., 1980. Development of children’s
concepts of illness. Pediatrics, 66 (6), 912-917.

58. Bikaako-Kajura, W., et al., 2006. Disclosure of HIV status and
adherence to daily drug regimens among HIV-infected children
in Uganda. AIDS and behavior, 10 (4 Suppl.), S85-93.
Blasini, I., et al., 2004. Disclosure model for pediatric patients
living with HIV in Puerto Rico.
Journal of developmental and behavioral pediatrics, 25 (3), 181-
189.
Bluebond-Langner, M., 1978. The private worlds of dying
children. Princeton, NJ: Princeton University Press.
Bradshaw, D., et al., 2003. Initial burden of disease estimates
for South Africa 2000. South Africa medical journal, 93 (9),
682-688.
Campbell, C., et al., 2005. ‘‘I have an evil child at my house’’:
stigma and HIV/AIDS management in a South African
community. American journal of public health, 95 (5), 808-815.
Chesler, M.A., Paris, J., and Barbarin, O.A., 1986. ‘‘Telling’’
the child with cancer: parental choices to share information with
ill children. Journal of pediatric psychiatry, 11 (4), 497-516.
Claflin, C.J. and Barbarin, O.A., 1991. Does telling lies protect
more? Relationships among
age, information disclosure, and what children with cancer see
and feel. Journal of pediatric psychiatry, 16, 169-191.
Cohen, J., et al., 1997. School-related issues among HIV-
infected children. Pediatrics, 100 (1), E8.
Corneli, A., et al., 2009. The role of disclosure in relation to
assent to participate in HIV-related research among HIV-
infected youth: a formative study. Journal of the International
AIDS Society, 12 (1), 17.
Domek, G., 2010. Debunking common barriers to pediatric HIV
disclosure. Brief report.
Journal of tropical pediatrics, 56 (6), 440-442.
Flanagan-Klygis, E., et al., 2001. Disclosing the diagnosis of
HIV in pediatrics. Journal of clinical ethics, 12 (2), 150-157.
Funck-Brentano, I., 1995. Informing a child about his illness in

59. HIV infection: words and meaning. Psychiatrie enfant, 38 (1),
109-139.
Gaylin, W. and Macklin, R., eds., 1982. Who speaks to the
child? The problem of proxy consent.
New York, NY: Plenum Press.
Gerson, A.C., Joyner, M., and Fosarelli, P., 2001. Disclosure of
HIV diagnosis to children: when, where, why and how. Journal
of pediatric health care, 15, 161-167.
Horwood, C., et al., 2010. Routine checks for HIV in children
attending primary health care
facilities in South Africa: attitudes of nurses and child
caregivers. Social science and medicine, 70, 313-320.
Hosegood, V., et al., 2007. Revealing the full extent of
households’ experiences of HIV and AIDS in rural South
Africa. Social science and medicine, 65 (6), 1249-1259.
Instone, S., 2000. Perceptions of children with HIV infection
when not told for so long: implications for diagnosis disclosure.
Journal of pediatric health care, 12, 235-243.
Kietzman, R., 2008. Ethical issues concerning disclosure of HIV
diagnoses to prenatally infected children and adolescents.
Journal of clinical ethics, 1991, 31-42.
Kouyoumdjian, F.G., Meyers, T., and Mitshizana, S., 2005.
Barriers to disclosure to children with HIV. Journal of tropical
pediatrics, 51 (5), 285-287.
Lesch, A., et al., 2007. Paediatric HIV/AIDS disclosure:
towards a developmental and process- oriented approach. AIDS
care, 19 (6), 811-816.
Lester, P., et al., 2002a. When the time comes to talk about
HIV: factors associated with
diagnostic disclosure and emotional distress in HIV-infected
children. Journal of acquired immune deficiency syndrome, 31,
309-317.
Lester, P., et al., 2002b. Diagnostic disclosure to HIV-infected
children: how parents decide when and what to tell. Clinical
child psychology and psychiatry, 7 (1), 85-99.
Lwin, R. and Melvin, D., 2001. Paediatric HIV infection.

60. Journal of child psychology and psychiatry, 42 (4), 427-438.
Maman, S., Abler, L., Parker, L., Lane, T., Chirowodza, A., and
Ntogwisangu, J., 2009. A
comparison of HIV stigma and discrimination in five
international sites: the influence of care and treatment resources
in high prevalence settings. Social science and medicine, 68
(12), 2271-2278.
Mellins, C.A., et al., 2002. Patterns of HIV status disclosure to
perinatally HIV-infected
children and subsequent mental health outcomes. Clinical child
psychology and psychiatry, 7 (1), 101-114.
Moodley, K., et al., 2006. Paediatric HIV disclosure in South
Africa - caregivers’ perspectives on discussing HIV with
infected children. South Africa medical journal, 96 (3), 201-
204.
Myer, L., et al., 2006. Healthcare providers’ perspectives on
discussing HIV status with infected children. Journal of tropical
pediatrics, 52 (4), 293-295.
Nagler, S.F., Adnopoz, J., and Forsyth, B.W.C., 1995.
Uncertainty, stigma and secrecy:
psychological aspects of AIDS for children and adolescents. In:
S. Geballe, J. Gruendel, and
W. Andiman, eds. Forgotten children of the AIDS epidemic.
New Haven: Yale University Press, 71-82.
Nam, S.L., et al., 2009. Discussing matters of sexual health with
children: what issues relating to disclosure of parental HIV
status reveal. AIDS care, 21 (3), 389-395.
National Department of Health, South Africa, 2008. Report: the
national HIV and syphilis
prevalence survey South Africa. Available from:
http://data.unaids.org/pub/Report/2008/20080904_southafrica_a
nc_2008_en.pdf
Nehring, W.M., Lashley, F.R., and Malm, K., 2000. Disclosing
the diagnosis of pediatric HIV infection: mothers’ views.
Journal of social pediatric nursing, 5 (1), 5-14.
No¨ stlinger, C. and Colebunders, R., 2006. Informing children

61. of their HIV status. Lancet, 368 (9534), 447.
Oberdorfer, P., et al., 2006. Disclosure of HIV/AIDS diagnosis
to HIV-infected children in Thailand. Journal of paediatrics and
child health, 42 (5), 283-288.
Orne-Gliemann, J., et al., 2008. Children and HIV/AIDS: from
research to policy and action in resource-limited settings. AIDS,
22 (7), 797-805.
Rollins, N., et al., 2007. Surveillance of mother-to-child
transmission prevention programmes at immunization clinics:
the case for universal screening. Bulletin of the World Health
Organization, 85 (4), 289-296.
Schulte, A., 2002. Consensus versus disagreement in AIDS-
related stigma; a comparison of reactions to AIDS and cancer
patients. Sociological perspectives, 45 (1), 81-104.
Sherman, B.F., et al., 2000. When children tell their friends
they have AIDS: possible consequences for psychological well-
being and disease progression. Psychosomatic medicine, 62,
238-247.
Simbayi, L.C., et al., 2007. Internalized stigma, discrimination,
and depression among men and women living with HIV/AIDS in
Cape Town, South Africa. Social science and medicine, 64 (9),
1823-1831.
Spinetta, J.J., 1980. Disease-related communication: how to tell.
In: J. Kellerman, ed. Psychological aspects of childhood cancer.
Springfield, IL: Charles C. Thomas, 257-269. Spinetta, J. and
Maloney, J., 1975. Death anxiety in the outpatient leukemic
child. Pediatrics,
56, 1034-1037.
Spinetta, J.J. and Maloney, L.J., 1978. The child with cancer:
patterns of communication and denial. Journal of consultant
clinical psychology, 46 (6), 1540-1541.
Thorne, C., Newell, M.-L., and Peckham, C.S., 2000. Disclosure
of diagnosis and planning for the future in HIV-affected
families in Europe. Child: care health and development, 26 (1),

62. 29-40.
Turner, B.J., et al., 1996. Health care of children and adults
with acquired immunodeficiency
syndrome. A population-based analysis. Archives of pediatric
and adolescent medicine, 150 (6), 615-622.
UNAIDS, 2009. AIDS academic update.
UNAIDS/09.36E/JC1700E. WHO: Geneva.
Uys, L., et al., 2005. Eating plastic, winning the lotto, joining
the WWW: descriptions of HIV/ AIDS in Africa. Journal of the
Association of Nurses in AIDS Care, 16 (3), 11-21.
Vaz, L., et al., 2008. The process of HIV status disclosure to
HIV-positive youth in Kinshasa, Democratic Republic of the
Congo. AIDS care, 20 (7), 842-852.
Vaz, L.M., et al., 2010. Telling children they have HIV: lessons
learned from findings of a qualitative study in sub-Saharan
Africa. AIDS patient care STDS, 24 (4), 247-256.
Visser, M.J., et al., 2008. To tell or not to tell: South African
women’s disclosure of HIV status during pregnancy. AIDS care,
20 (9), 1138-1145.
Waechter, E., 1973. Children’s awareness of fatal illness.
American journal of nursing, 71, 1168-1172.
Wiener, L.S., et al., 1996. Factors associated with disclosure of
diagnosis to children with HIV/ AIDS. Pediatric AIDS HIV
infection, 7 (5), 310-324.
Wiener, L., Septimus, A., and Grady, C., 1998. Psychosocial
support and ethical issues for the child and family. In: P. Pizzo
and K. Wilfert, eds. Pediatric AIDS: the challenge of HIV
infection in infants, children, and adolescents. Baltimore, MD:
Williams and Wilkins, 703-727.
Wiener, L., et al., 2008. How I wish to be remembered: the use
of an advance care planning document in adolescent and young
adult populations. Journal of palliative medicine, 11 (10), 1309-
1313.
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Innovation - The European Journal of Social Science Research
Vol. 24, Nos. 1-2, March-June 2011, 199-208
GENERAL ARTICLE
Changing methods of disclosure. Literature review of disclosure
to children with terminal illnesses, including HIV
G. Anita Heeren*
Center for Health Behavior and Communication Research,
School of Medicine, University of Pennsylvania, Philadelphia,
Pennsylvania, USA
(Received 13 December 2010; final version received 22
December 2010)
More than 30 years after the first discovery of the deadly HIV
virus, and in the wake of increased knowledge of transmission,
treatment and behavioral inter- vention development, parents
are still faced with the difficult task of whether, when and how
to inform their child about her or his HIV status. Except for
some general ethical considerations, there are no national or
international guidelines available for handling HIV status
disclosure to a child by parents and health professionals. Most
studies on disclosure address the problem of stigma and the
barriers to disclosure of HIV-positive status by adults to their
sexual partners, caretakers, families and communities, but very
few studies focus on disclosure to HIV-positive children. The
majority of the studies that address disclosure to children limit
themselves to stipulating reasons for barriers to such disclosure
instead of the skills and knowledge necessary for effective

64. disclosure to a child. Increasing availability of therapy for HIV
across the world presses the issue of disclosure to the child.
Even so, disclosure for children who are HIV-positive due to
vertical transmission continues to be very difficult. There is a
lack of interventions that consider guidelines for healthcare
professionals, parents or persons involved with taking care of
HIV-positive children. These interventions should be designed
in an understanding manner towards the culture where they
might be implemented and be as appropriate in the view of
integrating different family structures and the child’s
development.
Keywords: HIV vertical transmission; disclosure; child; parent;
stigma
Introduction
It is estimated worldwide that 2.1 million children younger than
15 years of age are living with HIV. Of these 1.8 million
children are living in Sub-Saharan Africa. The number of newly
infected children worldwide is estimated to be 430 000, with an
estimated number of 390 000 children living in the Sub-Saharan
African countries. Over 7400 new HIV infections arose on a day
in 2008. More than 97% were in low- and middle-income
countries and about 1200 cases of infections were in children
under 15 years of age. Approximately 6200 were in adults aged
15 years and older, of whom almost 48% were women and about
40% were young people aged 15-24 years of age (UNAIDS
2009).
South Africa is experiencing one of the largest HIV epidemics
in the world. In
2006 about 29.1% of pregnant women attending government
antenatal clinics were
*Email: [email protected]
ISSN 1351-1610 print/ISSN 1469-8412 online

65. # 2011 Interdisciplinary Centre for Comparative Research in the
Social Sciences and ICCR Foundation DOI:
10.1080/13511610.2011.553506
http://www.informaworld.com
HIV-positive (National Department of Health, South Africa
2008). Vertical transmission has resulted in a large burden of
pediatric HIV disease and the reversal of gains achieved in
reducing child mortality (Horwood et al. 2010). In South Africa,
HIV causes over 40% of child deaths (Bradshaw et al., 2003).
HIV-related illness and deaths have had a devastating effect on
households and communities (Hosegood et al. 2007). Despite
the introduction of interventions to prevent mother to child
transmission of HIV (PMTCT), high vertical transmission rates
have been reported (Rollins et al. 2007). Although anti-
retroviral treatment is now available, only 61% of the estimated
94 000 children in need have received treatment (UNICEF 2008,
Orne- Gliemann et al. 2008).
Methodology
This review paper focuses on the published literature
concerning the problematic of disclosure to HIV-positive
children. I searched for the keywords ‘‘HIV’’, ‘‘positive’’,
‘‘vertical transmission’’, ‘‘disclosure’’ and ‘‘children’’, using
Pub-Med and the Gateway Library from 1970 to 2010. I
compared the results between first- and third-world countries
with the main focus on Sub-Saharan Africa.
Historical overview
Since the beginning of the 1970s there have been some positive
changes in regards to disclosure towards the terminally sick
child (Bluebond-Langner 1978, Instone 2000). Before the 1970s
it was believed that children would not understand the meaning

66. of a serious illness and death, because of their young age
(Spinetta 1980, Claflin and Barbarin 1991), and in most
instances they were not talked to directly. It was believed the
child needed to be protected against any harmful information.
Today it is widely accepted that disclosing to the child as early
as possible is better for the child’s development and increases
survival rates and cooperation from children (Gaylin and
Macklin 1982, Waechter 1973). Before the 1980s the main
subject of disclosure to children was cancer, which raises
different questions from the diagnosis of HIV (Spinetta and
Maloney 1975, 1978, Nagler et al. 1995, Schulte 2002). HIV
affects all age groups, from infants to old people (Bibace and
Walsh 1980, Turner et al. 1996, UNAIDS 2009). Following the
introduction of anti-viral therapy in the early 1990s, people are
surviving longer and children who are born HIV-positive can,
taking into consideration the availability of treatment
and medial adherence, lead a successful life (Domek
2010, Bachanas et al. 2001, Battles and Wiener 2002). As
treatment expands to HIV-infected children, health
professionals and parents, in most cases the HIV-positive
mother or the caregivers of the children, are increasingly faced
with the task of disclosing to the child (Wiener et al. 1998).
HIV-infected children under medical care are seldom informed
of their HIV-status, despite some evidence from industrialized
countries indicating that disclosure might have positive
psychosocial and clinical outcomes (Bachanas et al. 2001,
Wiener et al. 1998). Studies conducted in industrialized nations
indi- cate that the proportion of HIV-infected children who have
not had their HIV status disclosed ranges in the US from 25 to
45% (Cohen et al. 1997, Mellins et al. 2002, Nehring et al.
2000, Wiener et al. 1998), is as high as 75-82% in Europe
(Funck-Brentano et al. 1997, Lwin and Melvin 2001, Thorne et
al. 2000, No¨ stlinger and Colebunders 2006) and is 29% in
Uganda (Bikaako-Kajura et al., 2006). In the
(
200

67. G.A. Heeren
)
(
Innovation
-
The European Journal of Social Science Research
201
)
industrialized countries disclosure is influenced by the age of
the child, its cognitive development, perceived right to know
(Lester et al. 2002a, 2002b, Nehring et al. 2000), deteriorating
health status or questioning by the child. In the developing
countries disclosure is more often determined by concerns about
adherence to treatment, the level of cognitive development and
age. In general, disclosure across cultures seems to be
determined by the age of the child and the desire to protect the
child against harmful information.
Ethical considerations
Because there are as yet no clear guidelines on how to discuss
or disclose HIV status with an infected child, the consequences
of full disclosure to the child have not clearly been examined.
Studies differ as to whether a higher incidence of psychological
and behavioral problems occurs among children who have not
been told about their diagnosis vs. children who have been
formally told. There are difficulties around the issue of how to
talk to the child and what should be said, in addition to who
should talk to the child. The dilemma also occurs if the parent
refuses to tell the child that he or she is HIV-positive out of
fear of how the child might react or what the child might say, or
that the child might talk to others, which might lead to gossip.
Another reason is fear of blame, or stigma and isolation. The

68. health professional might respect the parents’ wish not to
inform the child despite knowing that the child has become
sexually active. The ethical responsibility is questionable for
either side (Kietzman 2008).
The doctor-patient ratio is much higher in developed countries
than in developing countries. Therefore, the issue of disclosure
might be handled differently
in different parts of the world. In the Western world, with
sufficient medical professionals, psychologists and social
workers, there is more time to spend with a single patient than
in the developing countries, where there is a lack of health
professionals. The disclosure process might very often be
processed by a specially trained nurse rather than a doctor and
is less likely to be accompanied by a psychologist.
Since more children will be born who are HIV-positive, it is
crucial that guidelines are developed for concepts on how to
disclose, not only for health professionals but also to assist
parents and caretakers. This is important because they live with
the child and have daily contact with her or him. In countries
with less medical resources and fewer health professionals, it
might not be practical for medical doctors to take the time
needed to appropriately disclose to the child. Guidelines for
health professionals and parents on how and when to disclose
are urgently needed (Kietzman 2008).
Informed by whom?
One question that seems to play an important role in Western
society concerns who should inform the child. Typically
clinicians have assumed the responsibility of informing the
child about the disease, believing that they have the right to do
so because they have the knowledge (Kietzman 2008). This
assumption has been questioned in Africa, where most parents
and caretakers believe that they are the best person to talk to the
child (Wiener 1996, Lester et al. 2002a, 2002b, Moodley et al.
2006, Lesch et al. 2007). In this context, therefore, the parent

69. should be an important
target for guidance about the disease, infection, transmission,
diagnosis, symptoms and treatment. Without this combination of
knowledge and skill, the parent can feel disempowered and
refuse to talk to the child while the child might be getting older
and engaging in risky sexual activities without knowing the
risks. As a consequence, the uninformed child may unknowingly
infect others (Kietzman 2008). Interventions in Southern Africa
should, therefore, focus on empowering the parents, in addition
to health professionals, in order to more effectively affect the
behavior of HIV- positive children.
Age of child
At the beginning of the 1990s the question was no longer
whether the child should be told, but rather ‘‘how and when
should the child be told’’ (Lester et al. 2002a, 2002b, Kietzman
2008). Very often parents try to prevent the child from learning
the diagnosis of HIV. Most parents delay disclosure until the
age of around 10 years and prefer not to use the term HIV or
AIDS in the presence of the child. About 50% of parents believe
that disclosure should occur before the age of 12 (Blasini et al.
2004). The researchers argue that providing such information as
early as possible is critical for the development of the child and
that requisite programs need to be developed that are age-
appropriate for the child.
Reasons and barriers to disclosure
Domek (2010) examines reasons for disclosure and non-
disclosure as well as the benefit of both. Domek suggests that it
is important to understand the major barriers to disclosure and
the fear associated with disclosure in order to develop
appropriate guidelines to prepare the HIV-positive child for the

70. future. In this regard it might be useful to have a multi-
professional team to assist the caregiver by adapting the
disclosure discussion in order to meet the developmental phases
of the child.
I found only five publications by authors published in
Sub-Saharan Africa studies (Abad´ıa-Barrero and Larusso
2006, Bikaako-Kajura et al. 2006, Kouyoumdjian et al. 2005,
Myer et al. 2006, Oberdorfer et al., 2006). They try to better
understand the problematic issues around disclosure to an HIV-
positive child (Flanagan-Klygis et al. 2001).
Most studies do not specify the mode of pediatric HIV
acquisition (Vaz et al. 2008, Kouyoumdjian et al. 2005, Myer et
al. 2006). In South Africa, one study conducted using semi-
structured interviews with 40 health professionals found that
50% had talked to the patients, but only 18% were involved in
the disclosure with the child. The health professionals believed
that disclosure should start before the children were attending
school and that children would be able to understand the
meaning of their infection around the age of 10. They felt that
the best person to tell the child would be the parent or
caretaker, who should be supported by a health professional
with biomedical information. They felt that there was a need for
emotional support for the parents and their children (Myer et al.
2006).
Kouyoumdjian et al. (2005) explored in a South African study
the reasons for disclosure or non-disclosure among parents or
caregivers. Seventeen parents and caregivers participated in
focus group discussions. Some of the reasons for non-
disclosure were identified, including: fear of stigma, which
often leads to discrimina-
tion, social rejection and isolation for the child; fear of being
judged by the child; not having enough information to explain
the diagnosis or answer questions; the perception that the child
is too young to understand and might tell others; and disclosure

71. being seen as an emotional and/or psychological challenge for
the parent or the caregiver.
In Congo, Vaz et al. (2008), conducted semi-structured
interviews with 19 youth and 21 caregivers. The youth had been
informed about their status and the caregivers had disclosed to
their children. The youth were an average of 15 years old at the
time of disclosure. They felt that it was best to know their
status because they were then able to understand why they
needed to take medication. For most of them it was necessary to
lead a healthy and better life. It was felt that there was a need to
assist the parent and the child to understand the disease better
to be able to protect themselves and others and to stay healthy.
The researchers suggested that programs needed to be developed
for the population and should address the psychosocial needs of
both the children and the caregivers.
Vaz et al. (2010) report in another study the results of
interviews with eight caregiver-child dyads in Kinshasa, Congo.
All of the children had previously been informed about their
status and they ranged in ages between 8 and 17 years. Their
caregivers had informed all but one child. From the viewpoint
of the children, they were never talked to directly by their
health professional, only by their caregivers. The children
reported that in most cases they had been told that they suffered
from malaria, rather than HIV. The actual disclosure seemed to
have happened at a one time rather than over time and
appropriate to the age of the child. The children were left alone
with their fear and not informed about the disease and the
meaning of adherence to treatment (Vaz et al. 2010).
Stigma
One of the many reasons why disclosure is such a problem in
African society is stigma. Stigma is associated with risky
behavior having led to infection, which is considered avoidable
(Schulte 2002, Maman et al. 2009). Unfortunately this is linked
to behaviors such as drug use, promiscuity, homosexuality and

72. transactional sex (Simbayi et al. 2007). The fear of stigma is
very real in African society since it influences people’s
behavior towards others, including gossiping and attaching
negative terms to the person (Sherman et al. 2000, Uys et al.
2005).
One of the barriers to informing the child that it is HIV-positive
is the fear that the child might tell others such as friends,
neighbors or people at the school. This would most likely result
in stigma for the family or caregiver. This is especially the case
when the parent is HIV-positive, and also depends on the stage
of the disease of the parent, which determines their ability to
talk to the child (Gaylin and Macklin 1982, Wiener et al. 1998,
Gerson et al. 2001, Visser et al. 2008, Horwood et al. 2010).
Most of the time the health professionals and parents prefer to
prevent any direct conversation about the disease with the child
(Vaz et al. 2010). The parents may fear that the child might
conclude that he or she had done something wrong or that it
must be the fault of the parent that the child is HIV-positive.
HIV-positive mothers often feel guilty that they did not protect
the child against infection. Moodley et al. (2006) comes to the
conclusion that guidelines are needed for healthcare profes-
sionals and parents to assist the parents and guide the children.
Corneli et al. (2009) conducted a study in Congo; they
interviewed 19 youth, 36 parents and caregivers and 17 health
professionals about the role of disclosure. All participants knew
their status, and they believed that most youth wanted to be
informed about their status to protect themselves and not to
transmit the illness to others. They also felt that it made it
easier for them to adhere to medication, knowing and
understanding the disease. The parents felt that the child had the
right to know. In this group, the age of the usual disclosure was
between 11 and 15 years. They thought that more information
needed to be carefully designed to help children learn their
status. The greatest fear was that the child would respond with

73. depression, sadness, worry and fear of death.
Nam et al. (2009) interviewed 32 people, of whom 21 were
parents, in Botswana, aged around 37 years and their children,
aged 5-18 (those aged B5 years were not included) about their
reasons for disclosure and non-disclosure. The main reason for
the parent to disclose was their own HIV-positive status and
when they became sick.
The reaction of the children was generally supportive. The
reason for non-disclosure was the age of the child, the fear that
it would be too painful and the fear of stigma. Generally, sexual
health would not be discussed with the parent as it was seen as
inappropriate. The suggestion was made that intervention was
needed to assist parents and that these interventions needed to
be culturally appropriate. No intervention or other
developments were suggested.
Campbell et al. (2005) conducted a case study in South Africa;
they interviewed 44 people and additionally held focus group
sessions. They also used diaries. The main problem mentioned
with regard to disclosure was the fear of stigma: this is
connected with sex, sin and immorality. Some mothers said: ‘‘I
have an evil child in the house’’. Sick family members would
hide. The main problem was still that people died from anything
else but AIDS. They understood that the main problem lay in
intergenerational communication. The solution they saw was
further education and communication within the community. No
concept was offered.
Moodley et al. (2006) conducted semi-structured interviews in
South Africa with 174 parents; the mean age of the participants
was 33 (17-73), 91% were female and 176 were children aged
about 11. The parents believed that the best age to disclose
would be around 12 years of age. The parents believed strongly
that the child has the ‘‘right to know’’. Some 83% of the
participants believed that the parent or caregiver is the best
person to disclose, with only 16% feeling that the healthcare
provider should tell the child. Generally they would have liked
to see doctors being involved in the process of disclosure, but

74. understood that the lack of time did not allow this. There was a
general fear that the child would discuss the infection with
people outside the family. No program was developed or
suggested.
Lesch et al. (2007) examined the South African literature, which
focused on pediatric disclosure by health professionals vs.
parents. The health professionals supported disclosure over
several steps. They saw it as unethical when non-disclosure is
chosen. Conversely, most parents wanted to protect their child
against painful information and often supported partial
disclosure. The reason for non-disclosure was generally given
as fear of stigma and accidental disclosure.
Intervention studies
There is a dearth of research describing the development and
evaluation of interventions to facilitate disclosure. The only
published disclosure model we found
was by Blasini et al. (2004). They evaluated a disclosure model
for pediatric patients living with HIV in Puerto Rico. In this
model 16 health professionals, 39 parents and caregivers and 40
children participated. The group of researchers, a
multidisciplinary scientific team, developed first semi-
structured interviews and from these results designed an
intervention, which was led with structured interviews.
With these results they developed an intervention to address
many of the barriers to open communication about pediatric
HIV. Their five-step intervention targeting providers,
caregivers, and HIV-positive children involves:
(1) training sessions for health professionals in developmentally
appropriate disclosure;
(2) caregiver educational sessions and peer support groups;
(3) child assessment sessions throughout the process;
(4) combined family and staff disclosure sessions; and

75. (5) post-disclosure family groups for education and support.
The researchers took into consideration the following important
issues in their intervention development:
(1) age and development of the child;
(2) cultural factors that influence communication as well as
concepts of illness and death;
(3) family variables;
(4) quantity and quality of social support;
(5) mental health; and
(6) a child’s neurological and cognitive functioning.
The investigators reported that their intervention model
promotes healthy psycho- logical adjustment and better
adherence in children. Six months follow-up, post- disclosure,
70% of the participating youths endorsed feeling ‘‘normal’’ and
parents and caregivers reported that approximately 58% had
improved adherence. Although the majority of youths (85%)
and caregivers (97%) thought the disclosure was a positive
event, and many youth felt more supported by parents (58%),
grand- parents (48%), clinic staff (48%) and others as a result
of the intervention, there was not a comparison group with
which to measure these results.
Discussion
In summarizing the review of the literature one can conclude
that most studies are reports on what has been done. These are
mainly focus group sessions and semi-structured interviews. No
intervention concept has been developed on how to disclose to a
child. In the industrialized world, the impression is that the
clinicians have the best answer to the problem and should be the
persons to talk to the child, because they have the best
knowledge about the clinical development of the disease. In
African society the parent or the caretaker is seen as the best

76. person to tell the child. The parent might ask a health
professional for assistance with the disclosure, but the first
person should always be the parent. Guidelines should be
developed for disclosure for health professionals, parents and
caregivers. Studies have shown that children who know their
status develop with fewer problems and have a better
understanding of why they have to take medicine. Adherence is
much higher among these children (Wiener et al. 1998). Many
parents also argue that the child has a right to know and needs
to be encouraged to lead a normal life, and to be able to protect
him- or herself in the future (Corneli et al. 2009). An
intervention needs to focus on the benefit and the welfare of the
child and the goal needs to be to have an understanding of what
is best for the child. Programs need to consider the cultural
circumstances, and the abilities and developmental stages of the
child and the parent. Perhaps the best question to guide those
interested in developing the guidelines that we are here
proposing is: ‘‘How can we learn to see through the eyes of the
child? How can we learn how children feel and think?’’
Suggestions for disclosure for the child could be developing
guidelines for health professionals to assist parents in the steps
to disclose to the child. This cannot be a single step and needs
to be age- appropriate, considering the development of the child
and the skill level of the parents and caregivers. On the other
hand the child should be part of the
development since it is the child we have to lead into a positive
future.
References
Abad´ıa-Barrero, C.E. and Larusso, M.D., 2006. The disclosure
model versus a developmental illness experience model for
children and adolescents living with HIV/AIDS in Sa˜o Paulo,
Brazil. AIDS patient care STDS, 20 (1), 36-43.

77. Arun, S., Singh, A.K., Lodha, R., and Kabra, S.K., 2009.
Disclosure of the HIV infection status in children. Indian
journal of pediatrics, 76 (8), 805-808.
Bachanas, P.J., et al., 2001. Predictors of psychological
adjustment in school-age children infected with HIV. Journal of
pediatric psychology, 26, 343-352.
Battles, H.B. and Wiener, L.S., 2002. From adolescence through
young adulthood: psychological adjustment associated with
long-term survival of HIV. Journal of adolescent health, 30,
161-168.
Bibace, R. and Walsh, M.E., 1980. Development of children’s
concepts of illness. Pediatrics, 66 (6), 912-917.
Bikaako-Kajura, W., et al., 2006. Disclosure of HIV status and
adherence to daily drug regimens among HIV-infected children
in Uganda. AIDS and behavior, 10 (4 Suppl.), S85-93.
Blasini, I., et al., 2004. Disclosure model for pediatric patients
living with HIV in Puerto Rico.
Journal of developmental and behavioral pediatrics, 25 (3), 181-
189.
Bluebond-Langner, M., 1978. The private worlds of dying
children. Princeton, NJ: Princeton University Press.
Bradshaw, D., et al., 2003. Initial burden of disease estimates
for South Africa 2000. South Africa medical journal, 93 (9),
682-688.
Campbell, C., et al., 2005. ‘‘I have an evil child at my house’’:
stigma and HIV/AIDS management in a South African
community. American journal of public health, 95 (5), 808-815.
Chesler, M.A., Paris, J., and Barbarin, O.A., 1986. ‘‘Telling’’
the child with cancer: parental choices to share information with
ill children. Journal of pediatric psychiatry, 11 (4), 497-516.
Claflin, C.J. and Barbarin, O.A., 1991. Does telling lies protect
more? Relationships among
age, information disclosure, and what children with cancer see
and feel. Journal of pediatric psychiatry, 16, 169-191.
Cohen, J., et al., 1997. School-related issues among HIV-
infected children. Pediatrics, 100 (1), E8.

78. Corneli, A., et al., 2009. The role of disclosure in relation to
assent to participate in HIV-related research among HIV-
infected youth: a formative study. Journal of the International
AIDS Society, 12 (1), 17.
Domek, G., 2010. Debunking common barriers to pediatric HIV
disclosure. Brief report.
Journal of tropical pediatrics, 56 (6), 440-442.
Flanagan-Klygis, E., et al., 2001. Disclosing the diagnosis of
HIV in pediatrics. Journal of clinical ethics, 12 (2), 150-157.
Funck-Brentano, I., 1995. Informing a child about his illness in
HIV infection: words and meaning. Psychiatrie enfant, 38 (1),
109-139.
Gaylin, W. and Macklin, R., eds., 1982. Who speaks to the
child? The problem of proxy consent.
New York, NY: Plenum Press.
Gerson, A.C., Joyner, M., and Fosarelli, P., 2001. Disclosure of
HIV diagnosis to children: when, where, why and how. Journal
of pediatric health care, 15, 161-167.
Horwood, C., et al., 2010. Routine checks for HIV in children
attending primary health care
facilities in South Africa: attitudes of nurses and child
caregivers. Social science and medicine, 70, 313-320.
Hosegood, V., et al., 2007. Revealing the full extent of
households’ experiences of HIV and AIDS in rural South
Africa. Social science and medicine, 65 (6), 1249-1259.
Instone, S., 2000. Perceptions of children with HIV infection
when not told for so long: implications for diagnosis disclosure.
Journal of pediatric health care, 12, 235-243.
Kietzman, R., 2008. Ethical issues concerning disclosure of HIV
diagnoses to prenatally infected children and adolescents.
Journal of clinical ethics, 1991, 31-42.
Kouyoumdjian, F.G., Meyers, T., and Mitshizana, S., 2005.
Barriers to disclosure to children with HIV. Journal of tropical
pediatrics, 51 (5), 285-287.

79. Lesch, A., et al., 2007. Paediatric HIV/AIDS disclosure:
towards a developmental and process- oriented approach. AIDS
care, 19 (6), 811-816.
Lester, P., et al., 2002a. When the time comes to talk about
HIV: factors associated with
diagnostic disclosure and emotional distress in HIV-infected
children. Journal of acquired immune deficiency syndrome, 31,
309-317.
Lester, P., et al., 2002b. Diagnostic disclosure to HIV-infected
children: how parents decide when and what to tell. Clinical
child psychology and psychiatry, 7 (1), 85-99.
Lwin, R. and Melvin, D., 2001. Paediatric HIV infection.
Journal of child psychology and psychiatry, 42 (4), 427-438.
Maman, S., Abler, L., Parker, L., Lane, T., Chirowodza, A., and
Ntogwisangu, J., 2009. A
comparison of HIV stigma and discrimination in five
international sites: the influence of care and treatment resources
in high prevalence settings. Social science and medicine, 68
(12), 2271-2278.
Mellins, C.A., et al., 2002. Patterns of HIV status disclosure to
perinatally HIV-infected
children and subsequent mental health outcomes. Clinical child
psychology and psychiatry, 7 (1), 101-114.
Moodley, K., et al., 2006. Paediatric HIV disclosure in South
Africa - caregivers’ perspectives on discussing HIV with
infected children. South Africa medical journal, 96 (3), 201-
204.
Myer, L., et al., 2006. Healthcare providers’ perspectives on
discussing HIV status with infected children. Journal of tropical
pediatrics, 52 (4), 293-295.
Nagler, S.F., Adnopoz, J., and Forsyth, B.W.C., 1995.
Uncertainty, stigma and secrecy:
psychological aspects of AIDS for children and adolescents. In:
S. Geballe, J. Gruendel, and
W. Andiman, eds. Forgotten children of the AIDS epidemic.
New Haven: Yale University Press, 71-82.

80. Nam, S.L., et al., 2009. Discussing matters of sexual health with
children: what issues relating to disclosure of parental HIV
status reveal. AIDS care, 21 (3), 389-395.
National Department of Health, South Africa, 2008. Report: the
national HIV and syphilis
prevalence survey South Africa. Available from:
http://data.unaids.org/pub/Report/2008/20080904_southafrica_a
nc_2008_en.pdf
Nehring, W.M., Lashley, F.R., and Malm, K., 2000. Disclosing
the diagnosis of pediatric HIV infection: mothers’ views.
Journal of social pediatric nursing, 5 (1), 5-14.
No¨ stlinger, C. and Colebunders, R., 2006. Informing children
of their HIV status. Lancet, 368 (9534), 447.
Oberdorfer, P., et al., 2006. Disclosure of HIV/AIDS diagnosis
to HIV-infected children in Thailand. Journal of paediatrics and
child health, 42 (5), 283-288.
Orne-Gliemann, J., et al., 2008. Children and HIV/AIDS: from
research to policy and action in resource-limited settings. AIDS,
22 (7), 797-805.
Rollins, N., et al., 2007. Surveillance of mother-to-child
transmission prevention programmes at immunization clinics:
the case for universal screening. Bulletin of the World Health
Organization, 85 (4), 289-296.
Schulte, A., 2002. Consensus versus disagreement in AIDS-
related stigma; a comparison of reactions to AIDS and cancer
patients. Sociological perspectives, 45 (1), 81-104.
Sherman, B.F., et al., 2000. When children tell their friends
they have AIDS: possible consequences for psychological well-
being and disease progression. Psychosomatic medicine, 62,
238-247.
Simbayi, L.C., et al., 2007. Internalized stigma, discrimination,
and depression among men and women living with HIV/AIDS in
Cape Town, South Africa. Social science and medicine, 64 (9),
1823-1831.

81. Spinetta, J.J., 1980. Disease-related communication: how to tell.
In: J. Kellerman, ed. Psychological aspects of childhood cancer.
Springfield, IL: Charles C. Thomas, 257-269. Spinetta, J. and
Maloney, J., 1975. Death anxiety in the outpatient leukemic
child. Pediatrics,
56, 1034-1037.
Spinetta, J.J. and Maloney, L.J., 1978. The child with cancer:
patterns of communication and denial. Journal of consultant
clinical psychology, 46 (6), 1540-1541.
Thorne, C., Newell, M.-L., and Peckham, C.S., 2000. Disclosure
of diagnosis and planning for the future in HIV-affected
families in Europe. Child: care health and development, 26 (1),
29-40.
Turner, B.J., et al., 1996. Health care of children and adults
with acquired immunodeficiency
syndrome. A population-based analysis. Archives of pediatric
and adolescent medicine, 150 (6), 615-622.
UNAIDS, 2009. AIDS academic update.
UNAIDS/09.36E/JC1700E. WHO: Geneva.
Uys, L., et al., 2005. Eating plastic, winning the lotto, joining
the WWW: descriptions of HIV/ AIDS in Africa. Journal of the
Association of Nurses in AIDS Care, 16 (3), 11-21.
Vaz, L., et al., 2008. The process of HIV status disclosure to
HIV-positive youth in Kinshasa, Democratic Republic of the
Congo. AIDS care, 20 (7), 842-852.
Vaz, L.M., et al., 2010. Telling children they have HIV: lessons
learned from findings of a qualitative study in sub-Saharan
Africa. AIDS patient care STDS, 24 (4), 247-256.
Visser, M.J., et al., 2008. To tell or not to tell: South African
women’s disclosure of HIV status during pregnancy. AIDS care,
20 (9), 1138-1145.
Waechter, E., 1973. Children’s awareness of fatal illness.
American journal of nursing, 71, 1168-1172.
Wiener, L.S., et al., 1996. Factors associated with disclosure of
diagnosis to children with HIV/ AIDS. Pediatric AIDS HIV
infection, 7 (5), 310-324.

82. Wiener, L., Septimus, A., and Grady, C., 1998. Psychosocial
support and ethical issues for the child and family. In: P. Pizzo
and K. Wilfert, eds. Pediatric AIDS: the challenge of HIV
infection in infants, children, and adolescents. Baltimore, MD:
Williams and Wilkins, 703-727.
Wiener, L., et al., 2008. How I wish to be remembered: the use
of an advance care planning document in adolescent and young
adult populations. Journal of palliative medicine, 11 (10), 1309-
1313.
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2011; 33: e50–e56
WEB PAPER
The ethics of HIV testing and disclosure for healthcare
professionals: What do our future doctors think?
JULIE M. AULTMAN1 & NICOLE J. BORGES2
1Northeastern Ohio Universities College of Medicine, USA,
2Wright State University Boonshoft School of Medicine, USA
Abstract
Aim: This study examined future medical professionals’
attitudes and beliefs regarding mandatory human
immunodeficiency virus (HIV) testing and disclosure.
Method: A total of 54 US medical students were interviewed
regarding mandatory testing and disclosure of HIV status for
both patient and health care professional populations.
Interviews were qualitatively analyzed using thematic analysis

83. by the first author and verified by the second author.
Results: Medical students considered a variety of perspectives,
even placing themselves in the shoes of their patients or
imagining themselves as a healthcare professional with HIV.
Mixed opinions were presented regarding the importance of HIV
testing for students coupled with a fear about school
administration regarding HIV positive test results and the
outcome of a student’s career. Third- and fourth-year medical
students felt that there should be no obligation to disclose one’s
HIV status to patients, colleagues, or employers. However, most
of these students did feel that patients had an obligation to
disclose their HIV status to healthcare professionals.
Conclusion: This study gives medical educators a glimpse into
what our future doctors think about HIV testing and disclosure,
and how difficult it is for them to recognize that they can be
patients too, as they are conflicted by professional and personal
values.
Practice points
Present and future healthcare professionals may face the
challenges of having to not only request that patients disclose
their HIV status, but also to decide whether to report one’s own
HIV status to patients, colleagues, and/ or employing healthcare
institutions.
Given
the
lack
of
knowledge

84. about
HIV
testing,
and
the problems with anonymity, patients and HCWs alike, even
when knowledgeable in HIV treatment and pre- vention,
are
often
reluctant
to
get
tested
for
HIV
out
of fear that positive test results will affect reputations,
employment status and insurance
benefits.
Differences were noted among pre-clinical students (first- and
second-year students) and clinical students (third- and fourth-
year students who have been fully exposed to patient care) with

85. respect to the duty to patient care versus duty to
oneself.
By examining and identifying some of the beliefs and attitudes
surrounding such dilemmas, this information can be of help to
medical educators as they work with medical students and their
clinical preceptors to resolve many of the social and ethical
problems associated with the stigma of HIV disclosure, while
improving the overall health of individuals and
communities.Introduction
The overall aim of this qualitative study is to gain a deeper
understanding of future doctors’ attitudes and beliefs regarding
mandatory human immunodeficiency virus (HIV) testing and
disclosure, and to explore current medical students’ personal
biases and stigmas surrounding HIV testing and disclosure.
Present and future doctors may face the challenges of having
to not only request that patients disclose their HIV status, but
also to decide whether to report one’s own HIV status to
patients, colleagues, and/or employing healthcare institutions.
By examining and identifying some of the beliefs and attitudes
surrounding such dilemmas, we believe this information can
be of help to medical educators as they work with medical
students and their clinical preceptors to resolve many of the
social and ethical problems associated with the stigma of HIV
disclosure, while improving the overall health of individuals
and communities. In addition to the presentation and analysis
of our data, we provide curriculum recommendations for
ethics education for HIV testing and disclosure for medical
students. First, we will provide descriptive background infor-
mation on HIV testing and disclosure.
HIV testing
In the United States, there are several private and public HIV
testing sites including free-standing clinics, hospitals, state

86. Correspondence: J. M. Aultman, Department of Behavioral and
Community Health Sciences, Northeastern Ohio Universities
College of Medicine and Pharmacy, 4209 State Route 44, PO
Box 95, Rootstown, OH 44272-0095, USA. Tel: 330-325-6113;
fax: 330-325-5911; email: [email protected]
e50 ISSN 0142–159X print/ISSN 1466–187X
online/11/010050–7 © 2011 Informa UK Ltd.
DOI: 10.3109/0142159X.2011.530311
J. M. Aultman & N. J. Borges
The
ethics
of
HIV
testing
and
disclosure
e
52
e
51
health departments, and clinician offices. Every state, along
with Guam, Puerto Rico, and the US Virgin Islands offers

87. confidential testing, where a person’s name is recorded with test
results, and 45 states including Guam and Puerto Rico, offer
anonymous testing, where no name is used or connected to test
results (Center for Disease Control 2005). In reporting cases of
HIV, almost every state uses names. Five states use name-to-
code reporting and eight states only use codes. While it is
important to test and report individuals with HIV to better
understand the spread of the disease, to develop better safety
and preventative measures, and to deliver needed healthcare to
those who are afflicted, there are several ethical concerns about
the procedures for testing and reporting. Globally, many efforts
have been made to develop surveillance and reporting programs.
For example, in 1999, a European HIV reporting system
including 39 countries of the World Health Organization (WHO)
European Region was developed for AIDS reporting. Persons
who test positive are identified in various ways (e.g., names,
codes/identification numbers) and reported by clinicians and/or
laboratory personnel depending on the regulations of individual
countries. D’Amelio et al. revealed that 27% of the 121
countries evaluated have legislative measures in place
mandating HIV testing for vulnerable populations (e.g.,
commercial sex workers, men who have sex with men, injecting
drug users; D’Amelio et al. 2001; Li et al. 2007). Worldwide,
many individuals do not know the differences between
anonymous and confidential testing,1 or if they are aware of
mandatory testing and reporting programs, they may refuse to
get tested, realizing with a positive result their names or
identifying information may be reported. For those individuals
who are living in states that do not give them the option for
anonymity, they too are less likely to get tested. Recently,
recommendations by the Center for Disease Control (CDC
2006) suggest that all adults and adolescents (ages 13–64)
should be given voluntary, automatic, and routine HIV tests
upon entering a healthcare facility so as to normalize HIV
screening as a routine part of medical care. Marcia Angell
argues there is a need for HIV testing to become more routine

88. (Angell 1991). Using an ‘‘opt- out’’ approach, individuals may
have the opportunity to decline testing, but healthcare workers
(HCWs) are obligated to provide basic information about HIV,
including what positive and negative test results mean.
Although these recommendations may help to normalize the
HIV screening process, there may be no options for anonymity,
which may persuade individuals to opt-out, or even forgo
medical attention altogether out of fear of being tested without
prior consent.
Given the lack of knowledge about HIV testing, and the
problems with anonymity, patients and HCWs alike, even
when knowledgeable in HIV treatment and prevention, are
often reluctant to get tested for HIV out of fear that positive test
results will affect reputations, employment status and insur-
ance benefits. Although previous studies have critically eval-
uated both patients’ and HCWs’ perspectives regarding HIV
testing and disclosure (see, for example, Dixon-Mueller 2007;
Galletly et al. 2008; Kagan et al. 2008; Tesoriero et al. 2008),
there are few recent studies examining medical students’
perspectives (see e.g., Evans et al. 1993).
HIV disclosure
When tackling the issue of HIV disclosure, most studies focus
on whether patients have a duty to disclose their HIV status to
their partners and to healthcare professionals so as to acquire
needed therapies and treatments, as well as to protect healthcare
professionals from even the slightest possible exposure. Many
critics conclude that patients do have a duty to disclose their
HIV status to their partners, to anyone who may be susceptible
to HIV transmission, or to those profes- sionals who are
obligated to provide care and treatment. Under this popular
line of reasoning, supported by the CDC, the American
Medical Association, among other health orga- nizations, a
public health ethic appears to take precedent over individual
freedoms and the right to privacy. However, when tackling the
issue as to whether HCWs also have a duty to disclose their HIV
status to their patients (Perry et al. 2006), there is little

89. consensus as to whether disclosure is valuable, especially given
the low probability of transmission. In 1991, CDC
recommended that infected HCWs with HIV or Hepatitis B
should not perform exposure prone procedures unless they have
‘‘sought council from an expert review panel and [have] been
advised under what circumstances, if any, they may continue to
perform these procedures.’’ The CDC defined an exposure-
prone procedure to include ‘‘digital palpitation of a needle tip
in a body cavity or the simultaneous presence of the health care
worker’s fingers and a needle or other sharp instrument or
object in a poorly visualized anatomic site.’’ And, even if the
panels permit them to practice, it is recommended that HCWs
must still inform patients of their serologic status (Gostin
2000). The American Medical Association’s policy on HIV
disclosure reads, ‘‘HIV infected physicians should disclose
their HIV seropositivity to a public health officer or a local
review committee, and should refrain from doing procedures
that pose a significant risk of HIV transmission, or perform
those procedures only with the consent of the patient and the
permission of the local review committee.’’ Furthermore, ‘‘A
physician who has HIV disease or who is seropositive should
consult colleagues as to which activities the physician can
pursue without creating a risk to patients’’ (Blumenreich 1993).
Marcia Angell in ‘‘A Dual Approach to the AIDS Epidemic,’’
wrote that patients have a right to know whether a doctor or
nurse who performs invasive procedures is infected with HIV.
Infected HCWs should refrain from invasive procedures, or
should expect to have reasonable alternative work
(Blumenreich 1993). Nevertheless, the 1995 Clinton adminis-
tration instructed CDC to review its guidelines that arbitrarily
restrict HIV infected HCWs, which possibly lead to
discrimination.
Critics, such as American Law Professor, Gostin, have
proposed new national policies, emphasizing patient safety by
ensuring that infection control procedures are systematically
implemented in healthcare settings, which would focus on

90. ‘‘safer systems of practice rather than excluding and stigma-
tizing infected healthcare workers’’ (Gostin 2000).
Furthermore, Gostin argues that while a physician may choose
to put the patient first by disclosing his or her status, the law
should not require HCWs to disclose their HIV status, since it is
an invasion of the privacy of the HCW, and a
possible professional detriment to the therapeutic relationship
following such an emotional and unsettling conversation with
patients. That is, since the HIV infected HCW is also a patient,
disclosure may be embarrassing and damaging to one’s
professional reputation. Besides the fear of discrimination and
the view that disclosure is an invasion of privacy, Gostin and
others believe that since the risk of HIV transmission from
HCW to patient is too low to meet the legal standard for
disclosure, informed consent guidelines and laws should not
require HIV infected HCWs to disclose their status to patients.
But if disclosure may be embarrassing and damaging to a HCWs
medical career or transmission is too low to meet the legal
standard for disclosure, it would seem as though patients, just
as HCWs, should not be required to disclose their HIV status
when seeking non-invasive care, which may not be relevant to
the treatment and monitoring of HIV. Nonetheless, healthcare
professionals purport, simply for preventing harm to self and
other, the HIV status of patients should be known regardless of
the level of harm in diagnosing, monitoring, or treating patients
for related and non-related conditions and preventative care.
In the following study, these ethical issues are tackled by our
medical student-participants – our future doctors, whose
perspectives regarding HIV testing and disclosure for both
patients and HCWs give us insight into their critical thoughts
and ethical decision-making regarding personal and patient
care, and whether guidelines such as those created by the CDC
will be followed, or ignored, by our future physicians whether

91. they practice nationally or internationally with different
guidelines and laws.
Methods
During 2006–2007, a total of nine focus groups, containing 54
volunteer student-participants (34 females and 20 males),
ranging in ages 18–26, from two, four-year medical schools in
the United States, were interviewed by the investigators of this
qualitative study. Both medical institutions have an equal ratio
of males and females enrolled (50 : 50); however, there is an
unexplainable disproportionate number of female students who
volunteered at each level of their medical education (years 1–4).
All medical students were invited to participate via email
invitations and in-person classroom announcements, both of
which included an informational sheet describing the study and
role of voluntary participants (e.g., students may freely accept
or decline participating in the study, any student who
participates may leave the study at any point). Full institutional
review board (IRB) approval was obtained prior to the start of
the study. Six focus groups, containing 30 first- and second-
year students (19 females and 11 males) were inter- viewed
during their non-clinical training at their respective medical
schools. Three focus groups, containing 24 third- and fourth-
year medical students (15 females and 9 males), were
interviewed during their clinical training at their respective
medical schools, with the exception of three, third-year medical
students (3 males) who were interviewed during a psychiatry
clinical rotation at a local hospital. All IRB guide- lines and
ethical procedures were followed (i.e., informed consent). All
student-participants were asked a pre-established
set of general, open-ended questions regarding mandatory
testing and disclosure of HIV status for both patient and health
care professional populations. The open-endedness of these
questions, commonly used in qualitative research, prompted
students to verbalize their interpretations of concepts (e.g.,
‘‘compulsory’’ or ‘‘mandatory’’) and freely give their opinions

92. on difficult, ethical and professional issues, which enabled the
investigators to gain data with a range of attitudes and beliefs.
The pre-established, general questions used in the recorded
interviews are as follows:
(1) Do you think medical students should be tested for HIV?
How about physicians? Other healthcare professionals?
(2) Should HIV testing be voluntary or mandatory? Why or why
not?
(3) Do you think that patients should disclose their HIV status
to their physician?
(4) Are there any circumstances under which a patient should
not disclose this information about their health status?
(5) If a physician has HIV, do you think he/she should disclose
this to his/her patients? Please explain why or why not.
These pre-established questions comprise the first part of this
study; a separate set of questions focusing on current medical
students’ perspective on and use of universal precautions
comprise the second part of the study and findings are
reported in a separate paper titled ‘‘The ethical and pedagog-
ical effects of modeling ‘not-so-universal’ precautions’’.
Interviews for the first part of this study were conducted for
30–45 minutes, while focus group interviews for the entire
project lasted 60–75 minutes. Investigators used a hand-held,
digital audio recorder to record all interviews. Project inves-
tigators took hand-written notes during each focus group,
alerting them to significant points and patterns of experiences,
beliefs, and attitudes. All recorded interviews were transcribed.
Names and other identifiers that were verbalized by students
during the focus group sessions were not transcribed.
Transcripts were qualitatively evaluated by the project inves-
tigators individually and then collectively to ensure that
emerging themes in the data were objectively identified and
analyzed using thematic data analysis, whereby repetitive
themes emerged from students’ responses and meaning units
were recorded and coded. The project investigators
included the authors of this article, both of whom also

93. conducted the focus groups at their respective institutions; the
first author analyzed the data, and the second author verified
the analysis. Data from students’ answers (from the above
questions and discussion that followed) were divided into two
significant categories: HIV testing and HIV disclosure.
Results
In general, there were no identifiable differences in the reports
given by medical student-participants from the two medical
schools. In addition, there were no identifiable differences in
responses among males and females. However, there were
significant differences among pre-clinical students (first- and
second-year students) and clinical students (third- and fourth-
year students who have been fully exposed to patient care) with
respect to the duty to patient care versus duty to oneself.
Although most students expressed their personal opinions, many
students provided insightful, constructive, well-sup- ported
arguments surrounding HIV testing and disclosure, often
placing themselves in the shoes of their patients or reflectively
thinking on what it would be like to be a physician with HIV.
The focus groups conducted were useful not only for the
purposes of this study, but also for students’ medical education
by giving them an opportunity to discuss and reflect upon a
controversial topic in medicine and public health. Specific
results from this study are divided into two primary sections,
‘‘HIV testing’’ and ‘‘HIV disclosure,’’ along with relevant sub-
sections.
HIV testing
Do you think medical students should be tested for HIV? How
about physicians? Other healthcare professionals?
In response to the first focus group question, first- and second-
year students at both medical schools reported that testing can

94. reduce the social stigma associated with HIV; by having every
student experience the testing procedures from ‘‘a patient’s
perspective’’, along with a formal education about HIV from
clinical, psychological, and social perspectives, the stigma
could be reduced and students would be better informed to help
their patients and themselves in the prevention and treatment of
HIV. The majority of students who supported HIV testing in
medical school (or when they became licensed physicians) felt
that testing for HIV is an important step toward physically and
emotionally caring for themselves and their patients. They also
recognized that attitudes and beliefs may positively change in
ways that alleviate current stigma as HIV screening increases or
becomes a normalized practice. However, not all students
supported HIV testing for medical students and/or healthcare
professionals.
A total of nine first- and second-year students at both medical
schools feared the consequences of the HIV tests. Their greatest
fear was that of the medical school or administration finding
out about any risk factors (drug use0 or positive test results,
which, they believe, would ruin students’ future medical
careers. They expressed they would not be valued or accepted as
an HIV professional, which interestingly, provoked students to
think about what patients may feel and think with respect to
their own professional lives. Students from both medical
schools feared their privacy would not be protected and that
positive results would show up on their permanent records. One
male first-year student explained that he would not want to get
tested for incurable STDs ‘‘because of the possibility of the
school finding out.’’ Other students reported that because the
transmission rate was so small, and universal precautions were
in place, there would be no need to get tested. Twelve students
at each stage in the four-year medical school curriculum
explicitly argued that only those who are at risk for HIV should
be tested, but that testing should be voluntary regardless of the
risks to patients and colleagues. Students from both medical
schools (approxi- mately 75%, or 40 out of 54 clinical and non-

95. clinical) reported
that if healthcare professionals were tested positive for HIV,
negative consequences, such as lawsuits, loss of medical
licenses, and limited patient interaction, could occur. Rather
than directly answering the focus group question, third-year
students at both medical schools were inquisitive and asked
about the benefits of knowing the results of an HIV test as it
relates to the safety and protection of others. After re-directing
their questions and answers (when dialogue got ‘‘off-track’’) by
asking how they felt about being tested as medical students,
these third-year students felt that tests should be given to
healthcare professionals only if there is a significant transmis-
sion rate from physician to patient. Two fourth-year students at
one medical school added that ‘‘testing is expensive’’ and some
people, especially medical students, may not be able to pay for
the tests. The availability and accessibility of medical resources
needed to test medical students and healthcare professionals
alike was a general concern among the fourth- year students, as
well as how information gained from the tests is going to be
used (e.g., will information hurt your potential to get
insurance). Overall, there was little concern regarding the
possibilities of transmission of HIV from physician to patient.
Mandatory testing
Should HIV testing be voluntary or mandatory? Why or why
not?
It was duly noted among first through third-year medical
students at both institutions that the stigma becomes reduced
when testing is mandatory. First-year students at one medical
school indicated that mandatory testing may help more people
get treatment. A first-year student at the second medical school
indicated that ‘‘if we are not disclosing information about
ourselves then I don’t think we can ask our patients to provide
the information – no double standard.’’ Another student

96. reported, ‘‘I think I would lean towards HIV testing be
voluntary instead of mandatory. I really value having individ-
ual rights.’’ However, another first-year student stated, ‘‘I
would say mandatory. It’s just like.. .like our pap smears and
we test for that annually, and it’s not stigmatized. I don’t see
why we couldn’t do the same thing with HIV. Encourage women
and men to get their annual HIV test if they, or you know, at
least every few years.. .’’
Second-year students generally thought that so long as laws (or
guidelines) were in place to protect discrimination, healthcare
professionals and students should be mandatorily tested. A
female second-year student, echoing the same sentiment,
suggested that testing be anonymous and confi- dential if it
were to be mandatory. Another second-year student felt that one
would be more likely to pay attention [to universal precautions]
if a person’s HIV status were known. While first- and second-
year students from both medical schools indicated the stigma
would be greatly reduced with mandatory testing, third- and
fourth-year students felt that discrimination would occur and
the stigma would continue to exist, even though ‘‘HIV is no
longer a death sentence.’’
More than half of students (63%, or 34 out of 54 clinical and
non-clinical) interviewed at both medical schools explicitly
argued that individual rights are critical. If tests were manda-
tory, the right to privacy should be upheld to protect the
student or healthcare professional from negative conse-
quences, such as employment and insurance discrimination.
These students also indicated that mandatory testing would be a
waste of resources, since it is a common belief among students
and healthcare professionals that ‘‘we do not typically engage
in risky behaviors, such as unprotected sex, or fail to use
universal precautions’’.

97. Patient disclosure
Do you think that patients should disclose their HIV status to
their physician? Are there any circumstances under which a
patient should not disclose this information about their health
status?
We found that first- and second-year students (approximately
73%, or 22 out of 30 non-clinical students) expressed that
patients should disclose their HIV status to their physicians in
order to educate oneself and to prevent the possibility of a
misdiagnosis or wrong treatment regimen. A first-year student
at one medical school indicated that HIV testing is a mandatory
practice within the US military, so he has to get tested each year
that he is enrolled with the military. However, many first- and
second-year students indicated that because of the potential for
discrimination, patients should not have to disclose their HIV
status. One first-year student believed that it is the physician’s
responsibility to prevent the disease. First- year students from
both medical schools suggested that if a physician or healthcare
professional does not have to disclose their HIV status to the
patient, then the patient should not have to disclose his or her
status.
The general consensus among third- and fourth-year students at
both medical schools is for patients to disclose their HIV
status in order for healthcare professionals to properly treat
their patients and for properly protecting themselves when
working with HIV infected patients. Both groups of students
recognized that the stigma associated with HIV would still exist
regardless of patient disclosure. Most third- and fourth-year
students (79%, or 19 out of 24 clinical students) articulated how
transparency about one’s disease and disease-related
behaviors, or disclosure specifically, is an important patient
duty; it is the patient’s duty to protect the healthcare
professional and to seek and adhere to treatment.

98. Physician disclosure
If a physician has HIV, do you think he/she should disclose this
to his/her patients? Please explain why or why not.
First-year students at one medical school felt that if there is a
risk, then the physician should disclose his or her HIV status.
First- and second-year students at both medical schools believed
that it is up to the physician to disclose. One first- year student
at another medical school exclaimed that I am ‘‘too shocked
even to imagine’’ this could happen to a physician. Another
first-year student believed that so long a physician can practice
medicine, disclosing such personal information to a patient is
acceptable. A third student believed that disclosure should
depend on the specialty of the profession. A male second-year
student at one medical
school ‘‘would feel guilty’’ if he did not disclose his HIV status
to patients.
Those first- and second-year students who believe that
physicians should not disclose their HIV status to patients
explained that ‘‘the patient is not caring for the doctor,’’ or that
it is ‘‘not professional to disclose personal things.’’ Some first-
and second-year students indicated that due to the potential
loss of clients, a physician should not disclose his or her HIV
status. A second-year student stated ‘‘if you are an HIV surgeon
you wouldn’t be making the money because you would be
limited to only surgeries that involve only HIV patients.’’
One third-year student suggested that physicians disclose their
status in order to send the message to patients that they too need
to take precautions. Another third-year student reported ‘‘We
need to learn personal responsibility not just with universal
precautions but with whatever status we have.’’ A fourth-year
student at one medical school placed himself in the shoes of his
patients and reported, ‘‘If I was a patient, I would want to know
no matter what kind of doctor [was treating me].’’ Six students
questioned why even discuss HIV as a threat, since the threat is
so slim and prophylaxis is available. Knowing hepatitis was a

99. greater threat, these students could not understand why HIV is
still an issue. Three out of 10 fourth-year medical students
believe the patient has a right to know. The majority of third-
and fourth- year students believe that disclosure will not help
the healthcare professional or his or her patients, since the risk
of transmission is very slim.
Discussion
In this study, we explored how medical students feel about HIV
testing and disclosure, and sought to understand some of the
dilemmas they may face as future healthcare professionals. Due
to the qualitative nature of this study (i.e., using open- ended
questions in a focus group format), our medical student-
participants considered a variety of perspectives, even placing
themselves in the shoes of their patients or imagining
themselves as a healthcare professional with HIV. Regarding
duty to patients versus duty to oneself, when placed in the
physician’s shoes, third- and fourth-year medical students
consider the consequences (to themselves) more than patient
care, but emphasized patient obligations and responsibilities in
being transparent about their disease and disease-related
lifestyles and behaviors. First- and second-year students
emphasized the importance of testing to provide better care to
patients; they placed themselves in their patient’s shoes, and
were more empathetic to the emotional and social needs of
patients compared to the third- and fourth-year students. The
investigators attribute this difference to the lack of clinical
training among first- and second-year students, who are
idealistic in providing good care to patients and have not (yet)
developed jaded or cynical attitudes, which we witness in more
clinically-oriented students, interns, and residents. Also, third-
and fourth-year students generally have more exposure to the
business and legal practices related to medicine, and confront
justice issues such as resource allocation and avail- ability (one
reason why these students may have considered the cost of
compulsory testing).

100. Some students describe their unresolved conflicts between their
personal freedoms and professional obligations. For example,
medical student-participants, in identifying one of the core
ethical dilemmas of HIV testing and disclosure, report that
anonymity is important in the preservation of privacy and
personal freedom, but question how these values should be
balanced against the greater good of society. These ethical
issues are tackled by our medical student-participants – our
future doctors, whose perspectives regarding HIV testing and
disclosure for both patients and HCWs give us insight into their
critical thoughts and ethical decision-making regarding per-
sonal and patient care, and whether guidelines such as those
created by the CDC will be followed, or ignored, by our future
physicians. Mixed opinions were presented regarding the
importance of HIV testing for students coupled with a fear
about school administration regarding HIV positive test results
and the outcome of a student’s career.
Regarding HIV disclosure, some of our medical student-
participants recalled the case of Dr. David J. Acer, an American
dentist who was believed to have infected his patients with HIV
in the late 1980s, but immediately dismissed this case, since
accidental transmission of HIV from doctor to patient was never
proven (Tuboku-Metzger et al. 2005). Given the lack of
evidence showing a risk of transmission from a HCW to a
patient, our third- and fourth-year medical students felt that
because the risk was so slim, there should be no obligation to
disclose one’s HIV status to patients, colleagues, or employers.
However, most of these students did feel that patients had an
obligation to disclose their HIV status to healthcare profes-
sionals due to a greater risk of transmission.
Many physicians, in general, feel the most essential thing in
life is to continue practicing medicine and that disclosing their
HIV status would have negative outcomes, including perma-
nent loss of employment (Gerberding 1996; Fost 2000; Gostin

101. 2000, 2002; LeBlanc 2002; Weiss et al. 2005). Based on our
collected data, many of the medical students interviewed were
also afraid of the possible negative outcomes for disclosing
such a highly stigmatized disease. However, some students,
especially those in the early stages of their medical training,
thought that some of these negative outcomes could be
prevented if medical students are tested before making career
decisions that could affect themselves and their future patients
(e.g., choosing to practice psychiatry instead of surgery). A few
medical student-participants thought that HIV disclosure could
benefit the therapeutic relationship, others thought patients
should not be privy to HCWs personal information, but that
employers should be made aware so as to monitor safety
practices. Some physicians, who have disclosed their HIV status
to their department chairs or others in authoritative positions,
felt a sense of relief and were able to practice medicine without
stigmatization and discrimination, and with- out affecting
patient care. For example, one Chicago psychi- atrist explained,
‘‘I felt that though completely asymptomatic, informing my
department heads that I was HIV sero-positive was the only way
to keep work related stress at more manageable levels ... I only
share the information about my being HIVþ during the course of
treatment when a patient clearly needs the example of a role
model and slow progressor
living productively with HIV to provide a contrast to their
hopelessness regarding their own diagnosis.’’ (Shernoff 1996).
In closing, this study helps medical educators understand
students’ mindset, opinions, and beliefs about HIV testing and
disclosure. For those medical schools who already have this
topic integrated into their ethics curriculum, their faculty may
want to compare and contrast the goals and objectives for their
lectures and courses with the depth and breadth of perspec-
tives shared by students in this study. For schools where this is
not currently an ethics topic, we encourage their faculty to
derive innovative methods for exploring students thinking about

102. and discussing these issues, especially the effects of HIV on the
healthcare professional as patient. Learning opportu- nities
should be provided to medical students across the curriculum to
address the dilemmas regarding HIV testing and disclosure as it
is important to self-care of physicians, patient care, and to the
practice of medicine. It is important that medical educators
create safe forums for students to discuss their perspectives,
feelings, and attitudes surrounding HIV testing and disclosure,
and to provide up-to-date information regarding HIV
transmission and rules governing when and how to report
possible transmission (e.g., needle sticks). Furthermore, medical
education should recognize the need to teach students about
caring for themselves in addition to caring for patients. Most of
our students participating in this study had not thought about
how their own health, or absence of health, could affect patient
care and their career choices as physicians. By educating
students about their own personal health and well-being, we as
medical educators have the power to change the clinical
environment, guiding our students to become more
professionally and personally responsible for themselves and
their patients, to seek help and guidance without fear (e.g., to
report a needle stick without fear of being reprimanded by
superiors), and to recognize that disclosure in some instances is
a moral obligation to both patient and self. Although the sample
size was small, and the context of pre-clinical and clinical
training provided needed support in understanding the possible
differences among these student groups, this study gives
medical education a glimpse into what our future doctors think
about HIV testing and disclosure, and how difficult it is for
them to recognize that they can be patients too, conflicted by
professional and personal values and fearful of the conse-
quences in their professional lives. Medical education needs to
acknowledge that our future doctors may be or become patients
with a highly stigmatized disease, to create an environment that
neither discriminates patient nor profes- sional, and to guide
students in recognizing and resolving

103. conflicting personal and professional values and interests.
Declaration of interest: The authors report no conflicts of
interest. The authors alone are responsible for the content and
writing of this article.
Note
1. Anonymous testing uses code numbers to identify your test.
Your name is never used. You use the code to get your results.
You are the only person who knows your results. With
anonymous testing, you have complete control in deciding who
to tell and when. With confidential testing, your name is
recorded and linked to your test results. Even though this
information is kept private, others may have access to this
information, including health care providers, your insurance
company, and the health department.
Notes on contributors
JULIE M. AULTMAN, PhD, is a Bioethicist and an Associate
Professor of Behavioral Sciences at Northeastern Ohio
Universities College of Medicine and Pharmacy.
NICOLE J. BORGES, PhD, is an Associate Professor in the
Department of Community Health and Assistant Dean, Medical
Education Research and Evaluation in the Office of Academic
Affairs at the Boonshoft School of Medicine at Wright State
University.
References
Angell M. 1991. A dual approach to the AIDS epidemic. New
Engl J Med 324:1498–1500.
Blumenreich GA. 1993 [Internet]. The law and the AIDS-
infected healthcare worker. American Medical Association
Legal Briefs. Available from:

104. http://www.aana.com/Resources.aspx?ucNavMenu_TSMenuTarg
etID=54
&ucNavMenu_TSMenuTargetType=4&ucNavMenu_TSMenuID=
6&id= 2411&
Center for Disease Control 2005 [Internet]. Current Status of
HIV Infection Surveillance, January 2005. [Accessed 2008
November 11]. Available from:
http://www.hhs.gov/asl/testify/t050623a.html
Center for Disease Control 2006 [Internet]. MMWR Reports.
55(RR14):1–17. [Accessed 2008 November 11]. Available from:
http://www.cdc.gov/
mmwr/preview/mmwrhtml/rr5514a1.htm?s_cid=
D’Amelio R, Tuerlings E, Perito O, Biselli R, Natalicchio S,
Kingma S. 2001. A global review of legislation on HIV/AIDS:
The issue of HIV testing. JAIDS 28:173–179.
Dixon-Mueller R. 2007. The sexual ethics of HIV testing and
the rights and responsibilities of partners. Stud Fam Plann
38:284–296.
Evans JK, Bingham JS, Prat K, Carne CA. 1993. Attitudes of
medical students to HIV and AIDS. Genitourin Med 69(5):377–
380.
Fost N. 2000. Patient access to information on clinicians
infected with blood-borne pathogens. J Am Med Assoc
284:1696–1698.
Galletly CL, Pinkerton SD, Petroll AE. 2008. CDC
recommendations for opt- out testing and reactions to
unanticipated HIV diagnoses. AIDS Patient Care STDS 22:189–
193.
Gerberding JL. 1996. The infected healthcare provider. New
Engl J Med 334:594–595.
Gostin LA. 2000. Proposed national policy on health care
workers living with HIV/AIDS and other blood-borne
pathogens. J Am Med Assoc 284:1965–1970.
Gostin LA. 2002. Rights and duties of HIV infected health care
profes- sionals. Health Care Anal 10:67–85.

105. Kagan I, Ovadia KL, Kaneti T. 2008. Physicians’ and nurses’
views on infected health care workers. Nurs Ethics 15:573–585.
LeBlanc B. 2002 [Internet]. Does the duty to disclose include
personal disclosure by professionals? Professional practice and
liability on the net, 4(1). [Accessed 2008 November 11].
Available from: http:// www.sml-
law.com/publications/newsletters-detail.asp?DocID=2326
Li L, Wu Z, Wu S, Lee SJ, Rotheram-Borus MJ, Detels R, Jia
M, Sun S. 2007. Mandatory HIV testing in China: The
perception of health-care providers. Int J STD AIDS
18(7):476–481.
Perry JL, Pearson RD, Jagger J. 2006. Infected health care
workers and patient safety: A double standard. Am J Infect
Control 34:313–319.
Shernoff M. 1996. Physicians living with HIV/AIDS. J Int
Assoc Physicians AIDS Care 2(11). [Accessed 2008 November
13]. Available from: http://
www.thebody.com/content/art2467.html
Tesoriero JM, Battles HB, Heavner K, Leung SY, Nemeth C,
Pulver W, Birkhead GS. 2008. The effect of name-reporting and
partner notifica- tion on HIV testing in New York state. Am J
Public Health 98:728–735. Tuboku-Metzger J, Chiarello L,
Sinkowitz-Cochran RL, Casano-Dickerson A, Cardo D. 2005.
Public attitudes and opinions toward physicians and dentists
infected with bloodborne viruses: Results of a national survey.
Am J Infect Control 33:299–303.
Weiss ES, Makary MA, Wang T, Syin D, Pronovost PJ, Chang
D, Cornwell EE. 2005. Prevalence of blood-borne pathogens in
an urban, university- based general surgical practice. Ann Surg
241:803–319.
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106. AIDS Care
Vol. 21, No. 3, March 2009, 389-395
Discussing matters of sexual health with children: what issues
relating to disclosure of parental HIV status reveal
Sara Liane Nama,b*, Katherine Fieldinga, Ava Avalosb,c,
Tendani Gaolathec, Diana Dickinsonb,d, and Paul Wenzel
Geisslere
aInfectious Diseases Epidemiology Unit, London School of
Hygiene and Tropical Medicine, London, UK; bThe ART-LINC
Collaboration of the International Epidemiology Database to
Evaluate AIDS (IeDEA); cAdult Infectious Diseases Care
Centre, Princess Marina Hospital, Ministry of Health,
Gaborone, Botswana, Africa; dIndependence Surgery, Primary
Health, Gaborone,
Botswana, Africa; eHealth Policy Unit, London School of
Hygiene and Tropical Medicine, London, UK (Received 21
November 2007; final version received 12 June 2008)
Little is published about the disclosure of parents’ own HIV
status to their children in Africa. Research shows that keeping
family secrets from children, including those related to a
parent’s HIV status, can be detrimental to their psychological
well-being and to the structure of the family. Further, children
with HIV-positive parents have been shown to be more
vulnerable to poorer reproductive health outcomes. This
qualitative study in Botswana conducted in-depth interviews
among 21 HIV-positive parents on antiretroviral therapy. The
data revealed that parents found discussing the issue of HIV
with children difficult, including disclosing their own HIV
status to them. Reasons for disclosing included: children being
HIV positive, the rest of the family knowing, or the parent
becoming very sick. Reasons for not disclosing included:
believing the child to be too young, not knowing how to address
the issue of HIV, that it would be ‘‘too painful’’ for the
child/ren. Concern that other people might find out about their

107. status or fear of children experiencing stigmatising behaviour.
Interviews elucidated the difficulty that parents have in
discussing their own HIV status and more general sexual health
issues with their children. Parents and other guardians require
support in managing age-appropriate disclosure to their
children. This may further enable access to forums that can help
children cope with their fears about the future and develop life
skills in preparation for dealing with relationships of a sexual
nature and sexual health as children move into adulthood. In
developing such support mechanisms, changing family roles in
Botswana need to be taken into consideration and the role of
other family members in the upbringing of children in Tswana
society need to be recognised and utilised.
Keywords: HIV/AIDS; disclosure; children; ART; Africa;
Botswana
Introduction
HIV-positive parents taking antiretrovirals are faced with the
difficult decision of whether and what details to share about
their HIV with their children. Keeping family secrets can be
destructive to childrens’ well- being and to the family structure
(Cottle, 1980) and the related anxiety can lead to isolation and
disen- gagement from possible sources of support for children
(Siegel & Freund, 1994). Interviews with children orphaned due
to HIV in sub-Saharan Africa reveal that non-disclosure of
parental HIV status adversely affected their ability to cope with
their parent’s illness or subsequent death (FHI, 2003; Wood,
Chase, & Aggleton, 2006). Additionally, a growing body of
evidence demonstrates increased sexual and reproductive health
risks among children who are vulnerable or orphaned due to
HIV (Gregson et al., 2005; Nyamukapa et al., 2008).
Some studies have investigated African adult HIV
disclosure (Brou et al., 2007; Maman, Mbwambo,
Hogan, Kilonzo, & Sweat, 2001; Maman & Medley, 2004;

108. Norman, Chopra, & Kadiyala, 2007; Olley, Seedat, & Stein,
2004; Sagay et al., 2006; Skogmar et al., 2006) and some
research describes disclosure to children of the child’s own
HIV-positive status (Kouyoumdjian, Meyers, & Mtshizana,
2005; Myer, Moodley, Hendricks, & Cotton, 2006). A review of
US studies found that by age 12-13 years, 84% of HIV- positive
mothers had disclosed their own HIV status to their children
and mean ages of children disclosed to ranged from 7 to 10
years (Murphy, Steers, & Dello Stritto, 2001). A Belgian study
found that disclosure of a parent HIV-positive status among
African migrant families was lower than disclosure among
European families (5% compared to 20.5%, respectively) (Nos-
tlinger et al., 2004). However, there is little research about
disclosure of parental HIV status to their children in Africa.
In other settings, children who have been told their parents are
HIV positive have shown lower levels of
*Corresponding author. Email: [email protected]
ISSN 0954-0121 print/ISSN 1360-0451 online
# 2009 Taylor & Francis
DOI: 10.1080/09540120802270276
http://www.informaworld.com
390
S.L. Nam
et al.
AIDS Care
391

109. aggression and more positive self-esteem than those from whom
the information has been kept (Murphy et al., 2001). Other
research found that adolescents with infected mothers
experienced more difficulties with psychosocial adjustment
(more symptoms of externalising and internalising problems,
less social and cognitive competence) compared to those with
non-infected mothers but that depression was higher among
adolescents who were informed of their par- ents’ status
compared to those who were not informed (Armistead &
Forehand, 1995; Forehand et al., 1998). The decision whether to
disclose has been shown to be partly based on the child’s
perceived maturity and emotional stability and is more common
when chil- dren are: older; female; have experienced negative
family life events or who display more problem behaviour.
Parents who disclosed tend to: have larger social networks;
perceive that their children are experiencing HIV-related
stigma; experience less stigma, or alternatively have higher
perceived stress levels and are less effective at managing
parenting demands. Disclosure has also been associated with
income, perceived severity of physical symptoms and negative
family life events (Armistead, Tannenbaum, Forehand, Morse,
& Morse, 2001; Lee & Rotheram- Borus, 2002; Ostrom,
Serovich, Lim, & Mason, 2006).
Decisions by parents not to disclose are reportedly in order to
shelter children from stigma or to allow them a carefree
childhood. Among the possible detrimental impacts of
disclosure are: pressure to keep it a secret; real or perceived
stigma; stress and anxiety (Cree, Kay, Tisdall, & Wallace, 2006;
Murphy, 2008). Other stress triggers identified among children
in the USA and Africa include fear of: the anticipation of a
parent’s death; future losses and the need to adopt a more
‘grown up’ role as a carer (FHI, 2003; Reyland, Higgins-
D’Alessandro, & McMahon, 2002). Parents are, however, aware
of the dangers of non-disclosure, particularly that children
might discover the HIV- positive status of parent(s) from

110. another source (Nostlinger et al., 2004).
In the era of HIV in Botswana where prevalence is estimated at
24% (UNAIDS, 2007), family structural transformations are
dynamic and the relationship between children, their parents
and other family members is evolving. Increasingly, women
actively choose to remain unmarried in order to avoid
patrilineal family expectations (such as reduced custodial rights
over children) and due to lack of trust in men to remain faithful
in an age of HIV (Ingstad, 2002). As a result, maternal relatives
are more commonly involved in the lives of children while
fathers are becoming increasingly isolated from their offspring
(Livingstone, 2006). Children are often sent to live with their
grandparents freeing their
mother to seek employment (Ingstaad & Saugestad, 1984) or to
live with aunts who may be in employ- ment and can support
their nieces and nephews through school. A large number of
children have at least one parent who is HIV positive and
parents will need to develop strategies to discuss managing HIV
illness with their children, now that it has become a chronic
rather than necessarily terminal disease.
In this qualitative study examining factors relating to
antiretroviral therapy (ART) adherence, investiga- tors asked
participating parents about issues related to disclosure to their
children. The findings presented here offer some insight as to
why the rates of disclosure of parental HIV status to children
from this African setting might be different to those from other
settings.
Methods
The qualitative study examined issues related to adherence to
antiretrovirals among 32 adults from two clinical sites in
Gaborone, Botswana: the specia- list ART public-sector adult
Infectious Diseases Care Centre (IDCC) and a privately run
general family practice, The Independence Surgery (IS). In
February 2008 the IDCC had around 9,000 ART patients

111. receiving free antiretrovirals and the IS had around 1,500
patients taking antiretrovirals.
A grounded theory approach was adopted: in brief, this
methodology allows the hypothesis to evolve as the researcher
conducts the interviews thereby allowing other important
themes and con- cepts to emerge during examination of the core
topic (‘‘adherence to antiretrovirals’’ in this study) (Glaser &
Strauss, 1967; Strauss & Corbin, 1998). Sampling was
purposive: adults who had been on antiretrovir- als for at least
six months were eligible to participate and clinicians referred
potential participants who would provide a variety of good or
poor adherence experiences. A total of 32 people were
interviewed, of whom 21 were parents. One-on-one interviews
lasting between 45 and 75 minutes were conducted and
recorded. A translator was used when necessary. The
interviewer asked participants about: ideas and beliefs about
HIV and antiretrovirals; stigma; dis- closure; social support and
isolation; ideas and practices regarding antiretroviral adherence;
health- seeking practices and hopes and fears for the future. In
addition, participants who were parents were asked about
disclosure of their own HIV status to their children.
Data collection from all 32 participants continued until new
concepts related to the topic of focus (adherence) ceased to
arise. The coding was con- ducted manually by the principal
investigator and interviewer for this study who identified key
topics
Box 1: Basic Principles of Grounded theory.
‘‘Grounded Theory is an approach that is induc-
tively derived from the study of the phenomenon it represents
...
it

112. is
discovered,
developed,
and
provi-
sionally verified through systematic data
collection and analysis pertaining to that phenomenon (where)
data collection, analysis and theory stand in a reciprocal
relationship with each other.’’ (Glaser & Strauss, 1967).’’
Analysis takes place through a series of various coding
processes that can occur simultaneously with data collection
allowing for the theory to develop and be ques- tioned during
the
interviews.
Open coding is the analytic process through which concepts are
identified and their properties and dimensions are discovered in
data (properties are the characteristics of a category, the
delineation of which defines and gives it meaning. Dimensions
are the range along which general properties of a category vary,
giving specification to a category and variation to theory).
Selective coding is the process of integrating and refining
theory.
Axial
coding
is
the

113. process
of
relating
categories
to their subcategories, where coding occurs around the axis of a
category, linking categories at the level of properties and
dimensions.that arose from the interviews and transcripts. A
medical anthropologist guided data collection and analysis
through review of selected transcripts. A code book was
developed detailing the process of coding following the
principles outlined in grounded theory (see Box 1). This paper
presents the reasons why participants who were parents chose to
disclose or not disclose their HIV status from their children and
highlights issues related to parent-child commu- nication related
to sexual health as important themes that emerged. In common
with other research, we focus on children aged five years and
older.
Results
Of the 21 parents interviewed, the mean age was 37 years
(range: 22-55 years), 12 were female, 6 were from the private
sector and 13 (nine women, four men) were single parents.
Twelve were in full-time employment, three were job seeking
and all reported feeling healthy. The 21 parents cared for 40
children;
24 were aged between 5 and 18 years old and 16 children were
under five (who are not included in this analysis). Three of the
parents were responsible for six step or adopted children. Of the
24 children aged five or older, seven children (29%) had been

114. told about their parent’s HIV status; eight (33%) children were
thought to have guessed, and nine (38%) were believed to be
unaware of their parent’s HIV status (Table 1). Three parents
had children living with other relatives, and they had not
disclosed their HIV status to their children. Overall, four
parents (two women and two men) had disclosed their status to
their children older than five years.
Reasons for disclosure
The reasons for disclosure included that the situation was
already known to other family members or increasing ill-health
of the parent. Two parents became sick and felt that their
children needed to know the reason for their illness or told them
in order to impress upon the children the need for caution to
prevent them from becoming infected through caring for a sick
adult (Quote 1). One female participant had

115. two children aged nine and 15 who were known to be HIV
positive themselves. They were disclosed to not by their HIV-
positive mother but by her family, in order to explain their own
illnesses to them and to impress upon them the need to take
their medicines as their mother had failed to tell her children at
a time when she was depressed.
Quote 1
‘‘I’ve told my kids. Because they had to take care of me
- they have to be aware, when I was very sick and I didn’t want
to put them at that risk. So I had to tell them.’’ (38y old single
mother of 12y and 16y old).
Table 1. Median ages of children five years or older who have
not been told, were thought to have guessed or have been told
about their parents’ HIV status.
Children’s knowledge of parents’ HIV status:
Have not been told Thought to have guessed Have been told
Total
Number of children (%)
9 (38%)
8 (33%)
7 (29%)
24 (100%)
Median age, years (range)
11.9 (5-17)
11 (11-17)
13.4 (9-17)
12 (5-17)
Reasons for non-disclosure
Reasons parents gave for not disclosing to children included

116. feeling children were not old enough and not knowing how to
address the issue. Parents worried that the knowledge would be
‘‘too painful’’ for the child/ren and non-disclosure to other
people was also partly out of concern that the children might
find out from other people and face stigma as a result (Quote 2).
Quote 2
‘‘I love my kids so much - they are still at school, and I
wouldn’t like for them to be hearing that ‘your mum is
positive’, and what, what, what. All these kind of things.’’ (38y
old single mother of 14y and 16y old).
Parents who had not disclosed their status ex- pressed vague
plans to talk to their children in the future, but at the time of the
interview preferred to leave it to chance. Four parents said that
their children saw them taking the antiretrovirals and had
probably guessed what they were for, but had not discussed HIV
(Quote 3).
Quote 3
‘‘I guess the boy might know, but they [the children] don’t ever
ask me about it.’’ (48y old single mother of a 17y old son and
carer of 14y old niece).
Three of these parents said their children re- minded them to
take their pills, checked that they had taken them or brought
the pills to them with water, even though they had not told their
children about their status. This made parents think that these
children had guessed their status although they had not been
explicitly told and the parents appre- ciated this expression of
concern by their children (Quote 4).
Quote 4
‘‘I love it when my kids remind of the medication. Even [the
girl] she will just run to the bedroom and give me a glass of
water.’’ (38y old single mother of 14y and 16y).
Discussing sexual health
Parents described difficulties in addressing the issues of HIV
and sexual relationships with their children. Parents expressed a
preference to leave sexual and reproductive health topics for

117. schools to address, although they were not clear about what was
taught at school in relation to these issues. Among those who
did discuss such topics, only one mother directly addressed
preventing pregnancy and protecting one- self from HIV or
other sexually transmitted infections (Quote 5).
Quote 5
‘‘I haven’t shared anything with her [my daughter]. Fortunately
I’ve never been sick. I always teach her how she should handle
herself. At school when some- body gets injured I told her that
she should she shouldn’t touch somebody’s blood and she
knows that
- she’s been told at school also. [I tell her] to respect people
who are positive - to like them. Those who come out, like
maybe she will meet one children at school and that one kid is
positive or her mum is positive - to love them it’s something
that could happen to anybody even to her. So, she has to take
care of herself. I started talking to her about relationships when
she was 9. The whole reason was [that] kids ask things. You
should guide your child to choose what kind of a friend [she]
should make. People think that when you talk to a child about a
relationship, you are teaching her to do that [develop sexual
relationships], but you are not. But you are teaching her [is]
that she should be careful in choosing friends.’’ (37y old single
mother of a 13y old).
Three parents felt it was not necessary to talk to their children
about protecting themselves from HIV because they were
‘‘good’’ children and such studious and well-behaved children
who were not considered to be at risk of HIV. Conversely,
parents felt they would be more likely to discuss the ‘‘dangers’’
of HIV and pregnancy if a child was considered ‘‘naughty’’ or
‘‘troublesome’’ or who spent time with friends whom parents
considered inappropriate (Quote 6). Two parents described
discussing HIV in general as an educational intervention or to
prepare the children for the uncertain future.
Quote 6

118. ‘‘The eldest girl who is 15, ah! She doesn’t really seem to be
interested in most of those things she’s the type of person who
gets 99% at school every time so in her I don’t see much of a
problem she’s quite well educated. She’s very disciplined. The
problem may arise form the last born [11y] - hey! That one she
needs lots of guidance she was clever at school, but she’s not
good, and, eish! some of [her friends] are older than her, you
know, so she joined those instead of learning [from] her sister
this one is going to give us problems, so we need to find
information and start guiding her now.’’ (38y old father of
three).
Discussion
This study found that HIV-positive parents taking
antiretrovirals had difficulty discussing their HIV status with
their children, as has been found among African immigrants
overseas (Myer et al., 2006). This study is limited by its small
sample size but even so, the depth of information gathered
reveals parental inhibition about discussing reproductive and
sexual
health with their children. In common with other research (Lee
& Rotheram-Borus, 2002), parents in this study disclosed their
HIV status in response to their own worsening health and
appeared more likely to disclose to older (median age 14 years),
rather than younger (median age 11 years) children. Parents also
confirmed findings from other studies for the reasons not to
disclose their HIV status. This included wanting children to
have a carefree childhood, children being too young, not
wanting to worry older children and not wanting children to be
hurt by the reaction of others (Nostlinger et al., 2004).
Research from the USA has found that adoles- cents who knew
their parents’ HIV status fared no worse in terms of emotional
distress, self-esteem or parental bonding than those who had not

119. been told (Lee & Rotheram-Borus, 2002). In contrast, unstable
family circumstances and failure to discuss family life issues
have been negatively associated with adolescent sexual
behaviour in West Africa (Odimegwu, Solanke, & Adedokun,
2002).
Respect for one’s elders, and adult avoidance of discussion
about intimate issues has created an un- communicative
environment about sexuality in Africa even in the era of HIV
(Babaloa, Vondrasek, & Brown, 2001; Fortes, 1965). In
Botswana, it is generally considered inappropriate for children
to discuss sexual matters with their mothers, even more so with
their fathers. Although parents in this study were aware that
their children were taught about HIV at school, they did not
know what they were learning. The difficulty that parents have
in talking to children about their HIV has also been recorded in
Zambia where it resulted in poor succession planning (FHI,
2003).
The need for family-based, intergenerational HIV-treatment
programmes has been recognised (Rotheram-Borus, Flannery,
Rice, & Lester, 2005). Parents need age-appropriate support
about when, how and what to tell their children about their own
HIV status, and about the disease generally. Parents need
guidance on managing children’s responses, and on planning for
the future. Additionally, in the development of support
mechanisms to advise guar- dians on how to discuss HIV and
sexual health in general with children, the changing family roles
and typical intergenerational modes of communication need to
be taken into consideration. This might contribute to providing
vulnerable children (and orphans) with access to life skills to
mitigate the impact of their vulnerability through identifying
suitable support mechanisms for them in addressing these
issues. For example, an appropriate counselling model might
consider the role of parental siblings and
their offspring in the typical upbringing of Batswana children.
This would include involving children’s aunts, uncles and

120. cousins in the disclosure process and in their education in
matters related to HIV and reproductive health. The feature of
openness between alternate generations as seen in other African
settings (Whyte, Alber, & Geissler, 2004) is not a typical
feature in Tswana culture. With the increasing number of
grandparents taking care of their grandchildren, mechanisms
also need to address communication between grandparents and
grandchildren.
While Botswana strives to achieve an AIDS-free generation by
2016, the children of this new genera- tion will bear the
responsibility of coping with parents or carers who have HIV.
Additionally, in order to achieve the vision of 2016, children
need to be equipped with the necessary life skills to assist them
in protecting themselves from contracting and trans- mitting
HIV. Ensuring the provision of appropriate forums for
discussing sexuality could play an im- portant part in promoting
safer sexual practices among children and young adults. This
requires dialogue not only through schools, churches, peers and
the media but also within and between family members. Parents
and other carers will need struc- tured support in dealing with
disclosure to children and in discussing matters related to the
reproductive health with children.
Acknowledgements
The authors wish to acknowledge: all the staff, including Ms
Mpho Zwinila, and patients who took part in this study.
Funding was provided by the ART-LINC collabora- tion of the
International Epidemiology Database to Eval- uate AIDS
(IeDEA), the DfID HIV & STI Knowledge Programme and
GlaxoSmithKline. We further acknowl- edge Belinda Beresford
for her input to the paper and the comments provided by the
journal reviewers which strengthened this manuscript.

121. References
Armistead, L., & Forehand, R. (1995).For whom the bell tolls:
Parenting decisions and challenges faced by mothers who are
HIV seropositive Clinical Psychology: Science and Practice,
2(3), 239-250.
Armistead, L., & Tannenbaum, L., & Forehand, R., & Morse,
E., & Morse, P. (2001).Disclosing HIV status: Are mothers
telling their children? Journal of Pediatric Psychology, 26(1),
11-20.
Babaloa, S., Vondrasek, C., & Brown, J. (2001). Factors
affecting sexual practices in West Africa - A positive deviance
approach. Paper presented at the American
Public Health Association annual conference, 21-25 October,
Atlanta, GA.
Brou, H., Djohan, G., Becquet, R., Allou, G., Ekouevi, D.K.,
Viho, I., Leroy, V., Desgrees-du-Lou, A. (2007). When do HIV-
infected women disclose their HIV status to their male partner
and why? A study in a PMTCT programme, Abidjan. PLoS
Medicine, 4(12), e342.
Cottle, T. (1980). Children’s secrets.
Cree, V., & Kay, H., & Tisdall, E., & Wallace, J.
(2006).Listening to children and young people affected by
parental HIV: Findings from a Scottish study AIDS Care, 18(1),
73-76.
Family Health International (FHI). (2003). Voices from the
communities: The impact of HIV/AIDS on the lives of orphaned
children and their guardians. Bloomington, Indiana: Author.
Forehand, R., & Steele, R., & Armistead, L., & Morse, E.,
& Simon, P., & Clark, L. (1998).The Family Health Project:
Psychosocial adjustment of children whose mothers are HIV
infected Journal of Consulting Clinical Psychology, 66(3), 513-
520.
Fortes, M. (1965). Some reflections on ancestor worship in

122. Africa. In M. Fortes & D. Dieterlen (Eds.), African systems of
thought (pp. 122-142). London: Oxford University Press.
Glaser, B., & Strauss, A. (1967). The discovery of Grounded
Theory: Strategies for qualitative research.
Gregson, S., & Nyamukapa, C.A., & Garnett, G.P., &
Wambe, M., & Lewis, J.J., & Mason, P.R. (2005).HIV infection
and reproductive health in teenage women orphaned and made
vulnerable by AIDS in Zimbabwe AIDS Care, 17(7), 785-794.
Ingstaad, B., & Saugestad, S. (1984). Unmarried mothers in
a changing Tswana society - implications for household form
and viability.
Ingstad, B. (2002). Presented at: The value of grandchildren:
Changing relationships between generations in Bots- wana.
Paper presented at the Association of Social Anthropologists of
the United Kingdon and the Commonwealth conference, 7-12
April, Arusha, Tan- zania.
Kouyoumdjian, F., & Meyers, T., & Mtshizana, S.
(2005).Barriers to disclosure to children with HIV Journal of
Tropical Pediatrics, 51(5), 285-287.
Lee, M.B., & Rotheram-Borus, M.J. (2002).Parents’ dis-
closure of HIV to their children AIDS, 16(16), 2201- 2207.
Livingstone, J. (2006). Maintaining local dependencies: Elderly
women and global rehabilitation agendas in Southeastern
Botswana. In J. Cole & D. Durham (Eds.), Generations and
globalization: Family, youth, and age in the new world economy
(pp. 164-189). Indiana University Press.
Maman, S., & Mbwambo, J., & Hogan, N., & Kilonzo, G., &
Sweat, M. (2001).Women’s barriers to HIV-1 testing and
disclosure: Challenges for HIV-1 voluntary coun- selling and
testing AIDS Care, 13(5), 595-603.
Maman, S., & Medley, A. (2004). Gender dimensions of HIV
status disclosure to sexual partners: Rates, barriers and
outcomes. A review paper.
Murphy, D. (2008).HIV-positive mothers’ disclosure of their
serostatus to their young children: A review Clinical Child

123. Psychology and Psychiatry, 13(1), 105- 122.
Murphy, D., & Steers, W., & Dello Stritto, M. (2001).Ma- ternal
disclosure of mothers’ HIV serostatus to their young children
Journal of Family Psychology, 15(3), 441-450.
Myer, L., Moodley, K., Hendricks, F., & Cotton, M.
(2006). Healthcare providers’ perspectives on discuss- ing HIV
status with infected children. Journal of Tropical Pediatrics,
52(4), 293-295.
Norman, A., & Chopra, M., & Kadiyala, S. (2007).Factors
related to HIV disclosure in 2 South African commu- nities
American Journal of Public Health, 97(10), 1775- 1781.
Nostlinger, C., & Jonckheer, T., & De Belder, E., & Van
Winjgaerden, E., & Wylock, C., & Pelgrom, J. (2004).Families
affected by HIV: Parents’ and chil- dren’s characteristics and
disclosure to the children AIDS Care, 16(5), 641-648.
Nyamukapa, C.A., & Gregson, S., & Lopman, B., & Saito,
S., & Watts, H.J., & Monasch, R. (2008).HIV-asso- ciated
orphanhood and children’s psychosocial dis- tress: Theoretical
framework tested with data from Zimbabwe American Journal
of Public Health, 98(1), 133-141.
Odimegwu, C., & Solanke, L., & Adedokun, A. (2002).Par-
ental characteristics and adolescent sexual behaviour in Bida
local government area of Niger State, Nigeria African Journal
of Reproductive Health, 6(1), 95-106.
Olley, B., & Seedat, S., & Stein, D. (2004).Self-disclosure of
HIV serostatus in recently diagnosed patients with HIV in South
Africa African Journal of Reproductive Health, 8(2), 71-76.
Ostrom, R., & Serovich, J., & Lim, J., & Mason, T. (2006).The
role of sigma in reasons for HIV disclosure and non-disclosure
to children AIDS Care, 18(1), 60- 65.
Reyland, S.A., & Higgins-D’Alessandro, A., & McMahon,
T.J. (2002).Tell them you love them because you never know
when things could change: Voices of adolescents living with
HIV-positive mothers AIDS Care, 14(2), 285-294.
Rotheram-Borus, M.J., & Flannery, D., & Rice, E., &
Lester, P. (2005).Families living with HIV AIDS Care, 17(8),

124. 978-987.
Sagay, A.S., & Musa, J., & Ekwempu, C.C., & Imade, G.E., &
Babalola, A., & Daniyan, G. (2006).Partner dis- closure of HIV
status among HIV positive mothers in Northern Nigeria. African
Journal of Medicine and Medical Sciences Suppl., 35, 119-123.
Siegel, K., & Freund, B. (1994).Parental loss and latency
age children In B. Dane, & C. Levine (Eds.), AIDS and the new
orphans.
Skogmar, S., & Shakely, D., & Lans, M., & Danell, J., &
Andersson, R., & Tshandu, N. (2006).Effect of anti- retrovrial
treatment and counselling on disclosure of HIV-serostatus in
Johannesburg, South Africa AIDS Care, 18(7), 725-730.
Strauss, A., & Corbin, J. (1998). Basics of qualitative research:
Techniques and procedures for developing grounded theory (2nd
ed.).
UNAIDS. (2007). Country situation analysis: Botswana. UN
Joint Programme on AIDS, Geneva, Switzerland.
Whyte, S., & Alber, E., & Geissler, P. (2004).Lifetimes
intertwined - Grandparents and grandchildren in Africa Africa,
74(1), 1-5.
Wood, K., & Chase, E., & Aggleton, P. (2006).Telling the truth
is the best thing’: Teenage orphans’ experiences of parental
AIDS-related illness and bereavement in Zimbabwe Social
Science & Medicine, 63(7), 1923- 19331923-1933))))) (2006)..
Copyright of AIDS Care is the property of Routledge and its
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Ethical Principles of Psychologists and Code of Conduct

125. Including 2010 and 2016 Amendments
Effective date June 1, 2003 with amendments effective June 1,
2010 and January 1, 2017. Copyright © 2017 American
Psychological Association. All rights reserved.
Introduction and Applicability
The American Psychological Association's (APA) Ethical
Principles of Psychologists and Code of Conduct (hereinafter
referred to as the Ethics Code) consists of an Introduction,
a Preamble, five General Principles (A-E) and specific Ethical
Standards. The Introduction discusses the intent, organization,
procedural considerations, and scope of application of the
Ethics Code. The Preamble and General Principles are
aspirational goals to guide psychologists toward the highest
ideals of psychology. Although the Preamble and General
Principles are not themselves enforceable rules, they should be
considered by psychologists in arriving at an ethical course of
action. The Ethical Standards set forth enforceable rules for
conduct as psychologists. Most of the Ethical Standards are
written broadly, in order to apply to psychologists in varied
roles, although the application of an Ethical Standard may vary
depending on the context. The Ethical Standards are not
exhaustive. The fact that a given conduct is not specifically
addressed by an Ethical Standard does not mean that it is
necessarily either ethical or unethical.
This Ethics Code applies only to psychologists' activities that
are part of their scientific, educational, or professional roles as
psychologists. Areas covered include but are not limited to the
clinical, counseling, and school practice of psychology;
research; teaching; supervision of trainees; public service;
policy development; social intervention; development of
assessment instruments; conducting assessments; educational

126. counseling; organizational consulting; forensic activities;
program design and evaluation; and administration. This Ethics
Code applies to these activities across a variety of contexts,
such as in person, postal, telephone, Internet, and other
electronic transmissions. These activities shall be distinguished
from the purely private conduct of psychologists, which is not
within the purview of the Ethics Code.
Membership in the APA commits members and student affiliates
to comply with the standards of the APA Ethics Code and to the
rules and procedures used to enforce them. Lack of awareness
or misunderstanding of an Ethical Standard is not itself a
defense to a charge of unethical conduct.
The procedures for filing, investigating, and resolving
complaints of unethical conduct are described in the
current Rules and Procedures of the APA Ethics Committee.
APA may impose sanctions on its members for violations of the
standards of the Ethics Code, including termination of APA
membership, and may notify other bodies and individuals of its
actions. Actions that violate the standards of the Ethics Code
may also lead to the imposition of sanctions on psychologists or
students whether or not they are APA members by bodies other
than APA, including state psychological associations, other
professional groups, psychology boards, other state or federal
agencies, and payors for health services. In addition, APA may
take action against a member after his or her conviction of a
felony, expulsion or suspension from an affiliated state
psychological association, or suspension or loss of licensure.
When the sanction to be imposed by APA is less than expulsion,
the 2001 Rules and Procedures do not guarantee an opportunity
for an in-person hearing, but generally provide that complaints
will be resolved only on the basis of a submitted record.
The Ethics Code is intended to provide guidance for
psychologists and standards of professional conduct that can be
applied by the APA and by other bodies that choose to adopt
them. The Ethics Code is not intended to be a basis of civil
liability. Whether a psychologist has violated the Ethics Code

127. standards does not by itself determine whether the psychologist
is legally liable in a court action, whether a contract is
enforceable, or whether other legal consequences occur.
The modifiers used in some of the standards of this Ethics Code
(e.g., reasonably, appropriate, potentially) are included in the
standards when they would (1) allow professional judgment on
the part of psychologists, (2) eliminate injustice or inequality
that would occur without the modifier, (3) ensure applicability
across the broad range of activities conducted by psychologists,
or (4) guard against a set of rigid rules that might be quickly
outdated. As used in this Ethics Code, the term reasonable
means the prevailing professional judgment of psychologists
engaged in similar activities in similar circumstances, given the
knowledge the psychologist had or should have had at the time.
In the process of making decisions regarding their professional
behavior, psychologists must consider this Ethics Code in
addition to applicable laws and psychology board regulations.
In applying the Ethics Code to their professional work,
psychologists may consider other materials and guidelines that
have been adopted or endorsed by scientific and professional
psychological organizations and the dictates of their own
conscience, as well as consult with others within the field. If
this Ethics Code establishes a higher standard of conduct than is
required by law, psychologists must meet the higher ethical
standard. If psychologists' ethical responsibilities conflict with
law, regulations, or other governing legal authority,
psychologists make known their commitment to this Ethics
Code and take steps to resolve the conflict in a responsible
manner in keeping with basic principles of human rights.
Preamble
Psychologists are committed to increasing scientific and
professional knowledge of behavior and people's understanding
of themselves and others and to the use of such knowledge to
improve the condition of individuals, organizations, and
society. Psychologists respect and protect civil and human

128. rights and the central importance of freedom of inquiry and
expression in research, teaching, and publication. They strive to
help the public in developing informed judgments and choices
concerning human behavior. In doing so, they perform many
roles, such as researcher, educator, diagnostician, therapist,
supervisor, consultant, administrator, social interventionist, and
expert witness. This Ethics Code provides a common set of
principles and standards upon which psychologists build their
professional and scientific work.
This Ethics Code is intended to provide specific standards to
cover most situations encountered by psychologists. It has as its
goals the welfare and protection of the individuals and groups
with whom psychologists work and the education of members,
students, and the public regarding ethical standards of the
discipline.
The development of a dynamic set of ethical standards for
psychologists' work-related conduct requires a personal
commitment and lifelong effort to act ethically; to encourage
ethical behavior by students, supervisees, employees, and
colleagues; and to consult with others concerning ethical
problems.
General Principles
This section consists of General Principles. General Principles,
as opposed to Ethical Standards, are aspirational in nature.
Their intent is to guide and inspire psychologists toward the
very highest ethical ideals of the profession. General Principles,
in contrast to Ethical Standards, do not represent obligations
and should not form the basis for imposing sanctions. Relying
upon General Principles for either of these reasons distorts both
their meaning and purpose.
Principle A: Beneficence and Nonmaleficence
Psychologists strive to benefit those with whom they work and
take care to do no harm. In their professional actions,
psychologists seek to safeguard the welfare and rights of those
with whom they interact professionally and other affected
persons, and the welfare of animal subjects of research. When

129. conflicts occur among psychologists' obligations or concerns,
they attempt to resolve these conflicts in a responsible fashion
that avoids or minimizes harm. Because psychologists' scientific
and professional judgments and actions may affect the lives of
others, they are alert to and guard against personal, financial,
social, organizational, or political factors that might lead to
misuse of their influence. Psychologists strive to be aware of
the possible effect of their own physical and mental health on
their ability to help those with whom they work.
Principle B: Fidelity and Responsibility
Psychologists establish relationships of trust with those with
whom they work. They are aware of their professional and
scientific responsibilities to society and to the specific
communities in which they work. Psychologists uphold
professional standards of conduct, clarify their professional
roles and obligations, accept appropriate responsibility for their
behavior, and seek to manage conflicts of interest that could
lead to exploitation or harm. Psychologists consult with, refer
to, or cooperate with other professionals and institutions to the
extent needed to serve the best interests of those with whom
they work. They are concerned about the ethical compliance of
their colleagues' scientific and professional conduct.
Psychologists strive to contribute a portion of their professional
time for little or no compensation or personal advantage.
Principle C: Integrity
Psychologists seek to promote accuracy, honesty, and
truthfulness in the science, teaching, and practice of
psychology. In these activities psychologists do not steal, cheat
or engage in fraud, subterfuge, or intentional misrepresentation
of fact. Psychologists strive to keep their promises and to avoid
unwise or unclear commitments. In situations in which
deception may be ethically justifiable to maximize benefits and
minimize harm, psychologists have a serious obligation to
consider the need for, the possible consequences of, and their
responsibility to correct any resulting mistrust or other harmful
effects that arise from the use of such techniques.

130. Principle D: Justice
Psychologists recognize that fairness and justice entitle all
persons to access to and benefit from the contributions of
psychology and to equal quality in the processes, procedures,
and services being conducted by psychologists. Psychologists
exercise reasonable judgment and take precautions to ensure
that their potential biases, the boundaries of their competence,
and the limitations of their expertise do not lead to or condone
unjust practices.
Principle E: Respect for People's Rights and Dignity
Psychologists respect the dignity and worth of all people, and
the rights of individuals to privacy, confidentiality, and self-
determination. Psychologists are aware that special safeguards
may be necessary to protect the rights and welfare of persons or
communities whose vulnerabilities impair autonomous decision
making. Psychologists are aware of and respect cultural,
individual, and role differences, including those based on age,
gender, gender identity, race, ethnicity, culture, national origin,
religion, sexual orientation, disability, language, and
socioeconomic status, and consider these factors when working
with members of such groups. Psychologists try to eliminate the
effect on their work of biases based on those factors, and they
do not knowingly participate in or condone activities of others
based upon such prejudices.
Section 1: Resolving Ethical Issues
1.01 Misuse of Psychologists' Work
If psychologists learn of misuse or misrepresentation of their
work, they take reasonable steps to correct or minimize the
misuse or misrepresentation.
1.02 Conflicts Between Ethics and Law, Regulations, or Other
Governing Legal Authority
If psychologists’ ethical responsibilities conflict with law,
regulations, or other governing legal authority, psychologists
clarify the nature of the conflict, make known their commitment
to the Ethics Code, and take reasonable steps to resolve the
conflict consistent with the General Principles and Ethical

131. Standards of the Ethics Code. Under no circumstances may this
standard be used to justify or defend violating human rights.
1.03 Conflicts Between Ethics and Organizational Demands
If the demands of an organization with which psychologists are
affiliated or for whom they are working are in conflict with this
Ethics Code, psychologists clarify the nature of the conflict,
make known their commitment to the Ethics Code, and take
reasonable steps to resolve the conflict consistent with the
General Principles and Ethical Standards of the Ethics Code.
Under no circumstances may this standard be used to justify or
defend violating human rights.
1.04 Informal Resolution of Ethical Violations
When psychologists believe that there may have been an ethical
violation by another psychologist, they attempt to resolve the
issue by bringing it to the attention of that individual, if an
informal resolution appears appropriate and the intervention
does not violate any confidentiality rights that may be involved.
(See also Standards 1.02, Conflicts Between Ethics and Law,
Regulations, or Other Governing Legal Authority, and 1.03,
Conflicts Between Ethics and Organizational Demands.)
1.05 Reporting Ethical Violations
If an apparent ethical violation has substantially harmed or is
likely to substantially harm a person or organization and is not
appropriate for informal resolution under Standard 1.04,
Informal Resolution of Ethical Violations, or is not resolved
properly in that fashion, psychologists take further action
appropriate to the situation. Such action might include referral
to state or national committees on professional ethics, to state
licensing boards, or to the appropriate institutional authorities.
This standard does not apply when an intervention would
violate confidentiality rights or when psychologists have been
retained to review the work of another psychologist whose
professional conduct is in question. (See also Standard 1.02,
Conflicts Between Ethics and Law, Regulations, or Other
Governing Legal Authority.)
1.06 Cooperating with Ethics Committees

132. Psychologists cooperate in ethics investigations, proceedings,
and resulting requirements of the APA or any affiliated state
psychological association to which they belong. In doing so,
they address any confidentiality issues. Failure to cooperate is
itself an ethics violation. However, making a request for
deferment of adjudication of an ethics complaint pending the
outcome of litigation does not alone constitute noncooperation.
1.07 Improper Complaints
Psychologists do not file or encourage the filing of ethics
complaints that are made with reckless disregard for or willful
ignorance of facts that would disprove the allegation.
1.08 Unfair Discrimination Against Complainants and
Respondents
Psychologists do not deny persons employment, advancement,
admissions to academic or other programs, tenure, or
promotion, based solely upon their having made or their being
the subject of an ethics complaint. This does not preclude taking
action based upon the outcome of such proceedings or
considering other appropriate information.
Section 2: Competence
2.01 Boundaries of Competence
(a) Psychologists provide services, teach, and conduct research
with populations and in areas only within the boundaries of
their competence, based on their education, training, supervised
experience, consultation, study, or professional experience.
(b) Where scientific or professional knowledge in the discipline
of psychology establishes that an understanding of factors
associated with age, gender, gender identity, race, ethnicity,
culture, national origin, religion, sexual orientation, disability,
language, or socioeconomic status is essential for effective
implementation of their services or research, psychologists have
or obtain the training, experience, consultation, or supervision
necessary to ensure the competence of their services, or they
make appropriate referrals, except as provided in Standard 2.02,
Providing Services in Emergencies.
(c) Psychologists planning to provide services, teach, or

133. conduct research involving populations, areas, techniques, or
technologies new to them undertake relevant education,
training, supervised experience, consultation, or study.
(d) When psychologists are asked to provide services to
individuals for whom appropriate mental health services are not
available and for which psychologists have not obtained the
competence necessary, psychologists with closely related prior
training or experience may provide such services in order to
ensure that services are not denied if they make a reasonable
effort to obtain the competence required by using relevant
research, training, consultation, or study.
(e) In those emerging areas in which generally recognized
standards for preparatory training do not yet exist,
psychologists nevertheless take reasonable steps to ensure the
competence of their work and to protect clients/patients,
students, supervisees, research participants, organizational
clients, and others from harm.
(f) When assuming forensic roles, psychologists are or become
reasonably familiar with the judicial or administrative rules
governing their roles.
2.02 Providing Services in Emergencies
In emergencies, when psychologists provide services to
individuals for whom other mental health services are not
available and for which psychologists have not obtained the
necessary training, psychologists may provide such services in
order to ensure that services are not denied. The services are
discontinued as soon as the emergency has ended or appropriate
services are available.
2.03 Maintaining Competence
Psychologists undertake ongoing efforts to develop and
maintain their competence.
2.04 Bases for Scientific and Professional Judgments
Psychologists' work is based upon established scientific and
professional knowledge of the discipline. (See also
Standards 2.01e, Boundaries of Competence, and 10.01b,
Informed Consent to Therapy.)

134. 2.05 Delegation of Work to Others
Psychologists who delegate work to employees, supervisees, or
research or teaching assistants or who use the services of others,
such as interpreters, take reasonable steps to (1) avoid
delegating such work to persons who have a multiple
relationship with those being served that would likely lead to
exploitation or loss of objectivity; (2) authorize only those
responsibilities that such persons can be expected to perform
competently on the basis of their education, training, or
experience, either independently or with the level of supervision
being provided; and (3) see that such persons perform these
services competently. (See also Standards 2.02, Providing
Services in Emergencies; 3.05, Multiple Relationships; 4.01,
Maintaining Confidentiality; 9.01, Bases for Assessments; 9.02,
Use of Assessments; 9.03, Informed Consent in Assessments
; and 9.07, Assessment by Unqualified Persons.)
2.06 Personal Problems and Conflicts
(a) Psychologists refrain from initiating an activity when they
know or should know that there is a substantial likelihood that
their personal problems will prevent them from performing their
work-related activities in a competent manner.
(b) When psychologists become aware of personal problems that
may interfere with their performing work-related duties
adequately, they take appropriate measures, such as obtaining
professional consultation or assistance, and determine whether
they should limit, suspend, or terminate their work-related
duties. (See also Standard 10.10, Terminating Therapy.)
Section 3: Human Relations
3.01 Unfair Discrimination
In their work-related activities, psychologists do not engage in
unfair discrimination based on age, gender, gender identity,
race, ethnicity, culture, national origin, religion, sexual
orientation, disability, socioeconomic status, or any basis
proscribed by law.
3.02 Sexual Harassment
Psychologists do not engage in sexual harassment. Sexual

135. harassment is sexual solicitation, physical advances, or verbal
or nonverbal conduct that is sexual in nature, that occurs in
connection with the psychologist's activities or roles as a
psychologist, and that either (1) is unwelcome, is offensive, or
creates a hostile workplace or educational environment, and the
psychologist knows or is told this or (2) is sufficiently severe or
intense to be abusive to a reasonable person in the context.
Sexual harassment can consist of a single intense or severe act
or of multiple persistent or pervasive acts. (See also
Standard 1.08, Unfair Discrimination Against Complainants and
Respondents.)
3.03 Other Harassment
Psychologists do not knowingly engage in behavior that is
harassing or demeaning to persons with whom they interact in
their work based on factors such as those persons' age, gender,
gender identity, race, ethnicity, culture, national origin,
religion, sexual orientation, disability, language, or
socioeconomic status.
3.04 Avoiding Harm
(a) Psychologists take reasonable steps to avoid harming their
clients/patients, students, supervisees, research participants,
organizational clients, and others with whom they work, and to
minimize harm where it is foreseeable and unavoidable.
(b) Psychologists do not participate in, facilitate, assist, or
otherwise engage in torture, defined as any act by which severe
pain or suffering, whether physical or mental, is intentionally
inflicted on a person, or in any other cruel, inhuman, or
degrading behavior that violates 3.04(a).
3.05 Multiple Relationships
(a) A multiple relationship occurs when a psychologist is in a
professional role with a person and (1) at the same time is in
another role with the same person, (2) at the same time is in a
relationship with a person closely associated with or related to
the person with whom the psychologist has the professional
relationship, or (3) promises to enter into another relationship
in the future with the person or a person closely associated with

136. or related to the person.
A psychologist refrains from entering into a multiple
relationship if the multiple relationship could reasonably be
expected to impair the psychologist's objectivity, competence,
or effectiveness in performing his or her functions as a
psychologist, or otherwise risks exploitation or harm to the
person with whom the professional relationship exists.
Multiple relationships that would not reasonably be expected to
cause impairment or risk exploitation or harm are not unethical.
(b) If a psychologist finds that, due to unforeseen factors, a
potentially harmful multiple relationship has arisen, the
psychologist takes reasonable steps to resolve it with due regard
for the best interests of the affected person and maximal
compliance with the Ethics Code.
(c) When psychologists are required by law, institutional policy,
or extraordinary circumstances to serve in more than one role in
judicial or administrative proceedings, at the outset they clarify
role expectations and the extent of confidentiality and thereafter
as changes occur. (See also Standards 3.04, Avoiding Harm,
and 3.07, Third-Party Requests for Services.)
3.06 Conflict of Interest
Psychologists refrain from taking on a professional role when
personal, scientific, professional, legal, financial, or other
interests or relationships could reasonably be expected to (1)
impair their objectivity, competence, or effectiveness in
performing their functions as psychologists or (2) expose the
person or organization with whom the professional relationship
exists to harm or exploitation.
3.07 Third-Party Requests for Services
When psychologists agree to provide services to a person or
entity at the request of a third party, psychologists attempt to
clarify at the outset of the service the nature of the relationship
with all individuals or organizations involved. This clarification
includes the role of the psychologist (e.g., therapist, consultant,
diagnostician, or expert witness), an identification of who is the
client, the probable uses of the services provided or the

137. information obtained, and the fact that there may be limits to
confidentiality. (See also Standards 3.05, Multiple
relationships, and 4.02, Discussing the Limits of
Confidentiality.)
3.08 Exploitative Relationships
Psychologists do not exploit persons over whom they have
supervisory, evaluative or other authority such as
clients/patients, students, supervisees, research participants, and
employees. (See also Standards 3.05, Multiple
Relationships; 6.04, Fees and Financial Arrangements; 6.05,
Barter with Clients/Patients; 7.07, Sexual Relationships with
Students and Supervisees; 10.05, Sexual Intimacies with
Current Therapy Clients/Patients; 10.06, Sexual Intimacies with
Relatives or Significant Others of Current Therapy
Clients/Patients; 10.07, Therapy with Former Sexual Partners;
and 10.08, Sexual Intimacies with Former Therapy
Clients/Patients.)
3.09 Cooperation with Other Professionals
When indicated and professionally appropriate, psychologists
cooperate with other professionals in order to serve their
clients/patients effectively and appropriately. (See
also Standard 4.05, Disclosures.)
3.10 Informed Consent
(a) When psychologists conduct research or provide assessment,
therapy, counseling, or consulting services in person or via
electronic transmission or other forms of communication, they
obtain the informed consent of the individual or individuals
using language that is reasonably understandable to that person
or persons except when conducting such activities without
consent is mandated by law or governmental regulation or as
otherwise provided in this Ethics Code. (See also
Standards 8.02, Informed Consent to Research; 9.03, Informed
Consent in Assessments; and 10.01, Informed Consent to
Therapy.)
(b) For persons who are legally incapable of giving informed
consent, psychologists nevertheless (1) provide an appropriate

138. explanation, (2) seek the individual's assent, (3) consider such
persons' preferences and best interests, and (4) obtain
appropriate permission from a legally authorized person, if such
substitute consent is permitted or required by law. When
consent by a legally authorized person is not permitted or
required by law, psychologists take reasonable steps to protect
the individual's rights and welfare.
(c) When psychological services are court ordered or otherwise
mandated, psychologists inform the individual of the nature of
the anticipated services, including whether the services are
court ordered or mandated and any limits of confidentiality,
before proceeding.
(d) Psychologists appropriately document written or oral
consent, permission, and assent. (See also Standards 8.02,
Informed Consent to Research; 9.03, Informed Consent in
Assessments; and 10.01, Informed Consent to Therapy.)
3.11 Psychological Services Delivered to or Through
Organizations
(a) Psychologists delivering services to or through organizations
provide information beforehand to clients and when appropriate
those directly affected by the services about (1) the nature and
objectives of the services, (2) the intended recipients, (3) which
of the individuals are clients, (4) the relationship the
psychologist will have with each person and the organization,
(5) the probable uses of services provided and information
obtained, (6) who will have access to the information, and (7)
limits of confidentiality. As soon as feasible, they provide
information about the results and conclusions of such services
to appropriate persons.
(b) If psychologists will be precluded by law or by
organizational roles from providing such information to
particular individuals or groups, they so inform those
individuals or groups at the outset of the service.
3.12 Interruption of Psychological Services
Unless otherwise covered by contract, psychologists make
reasonable efforts to plan for facilitating services in the event

139. that psychological services are interrupted by factors such as
the psychologist's illness, death, unavailability, relocation, or
retirement or by the client's/patient's relocation or financial
limitations. (See also Standard 6.02c, Maintenance,
Dissemination, and Disposal of Confidential Records of
Professional and Scientific Work.)
Section 4: Privacy and Confidentiality
4.01 Maintaining Confidentiality
Psychologists have a primary obligation and take reasonable
precautions to protect confidential information obtained through
or stored in any medium, recognizing that the extent and limits
of confidentiality may be regulated by law or established by
institutional rules or professional or scientific relationship. (See
also Standard 2.05, Delegation of Work to Others.)
4.02 Discussing the Limits of Confidentiality
(a) Psychologists discuss with persons (including, to the extent
feasible, persons who are legally incapable of giving informed
consent and their legal representatives) and organizations with
whom they establish a scientific or professional relationship (1)
the relevant limits of confidentiality and (2) the foreseeable
uses of the information generated through their psychological
activities. (See also Standard 3.10, Informed Consent.)
(b) Unless it is not feasible or is contraindicated, the discussion
of confidentiality occurs at the outset of the relationship and
thereafter as new circumstances may warrant.
(c) Psychologists who offer services, products, or information
via electronic transmission inform clients/patients of the risks
to privacy and limits of confidentiality.
4.03 Recording
Before recording the voices or images of individuals to whom
they provide services, psychologists obtain permission from all
such persons or their legal representatives. (See also
Standards 8.03, Informed Consent for Recording Voices and
Images in Research; 8.05, Dispensing with Informed Consent
for Research; and 8.07, Deception in Research.)
4.04 Minimizing Intrusions on Privacy

140. (a) Psychologists include in written and oral reports and
consultations, only information germane to the purpose for
which the communication is made.
(b) Psychologists discuss confidential information obtained in
their work only for appropriate scientific or professional
purposes and only with persons clearly concerned with such
matters.
4.05 Disclosures
(a) Psychologists may disclose confidential information with the
appropriate consent of the organizational client, the individual
client/patient, or another legally authorized person on behalf of
the client/patient unless prohibited by law.
(b) Psychologists disclose confidential information without the
consent of the individual only as mandated by law, or where
permitted by law for a valid purpose such as to (1) provide
needed professional services; (2) obtain appropriate
professional consultations; (3) protect the client/patient,
psychologist, or others from harm; or (4) obtain payment for
services from a client/patient, in which instance disclosure is
limited to the minimum that is necessary to achieve the purpose.
(See also Standard 6.04e, Fees and Financial Arrangements.)
4.06 Consultations
When consulting with colleagues, (1) psychologists do not
disclose confidential information that reasonably could lead to
the identification of a client/patient, research participant, or
other person or organization with whom they have a
confidential relationship unless they have obtained the prior
consent of the person or organization or the disclosure cannot
be avoided, and (2) they disclose information only to the extent
necessary to achieve the purposes of the consultation. (See also
Standard 4.01, Maintaining Confidentiality.)
4.07 Use of Confidential Information for Didactic or Other
Purposes
Psychologists do not disclose in their writings, lectures, or
other public media, confidential, personally identifiable
information concerning their clients/patients, students, research

141. participants, organizational clients, or other recipients of their
services that they obtained during the course of their work,
unless (1) they take reasonable steps to disguise the person or
organization, (2) the person or organization has consented in
writing, or (3) there is legal authorization for doing so.
Section 5: Advertising and Other Public Statements
5.01 Avoidance of False or Deceptive Statements
(a) Public statements include but are not limited to paid or
unpaid advertising, product endorsements, grant applications,
licensing applications, other credentialing applications,
brochures, printed matter, directory listings, personal resumes
or curricula vitae, or comments for use in media such as print or
electronic transmission, statements in legal proceedings,
lectures and public oral presentations, and published materials.
Psychologists do not knowingly make public statements that are
false, deceptive, or fraudulent concerning their research,
practice, or other work activities or those of persons or
organizations with which they are affiliated.
(b) Psychologists do not make false, deceptive, or fraudulent
statements concerning (1) their training, experience, or
competence; (2) their academic degrees; (3) their credentials;
(4) their institutional or association affiliations; (5) their
services; (6) the scientific or clinical basis for, or results or
degree of success of, their services; (7) their fees; or (8) their
publications or research findings.
(c) Psychologists claim degrees as credentials for their health
services only if those degrees (1) were earned from a regionally
accredited educational institution or (2) were the basis for
psychology licensure by the state in which they practice.
5.02 Statements by Others
(a) Psychologists who engage others to create or place public
statements that promote their professional practice, products, or
activities retain professional responsibility for such statements.
(b) Psychologists do not compensate employees of press, radio,
television, or other communication media in return for publicity
in a news item. (See also Standard 1.01, Misuse of

142. Psychologists' Work.)
(c) A paid advertisement relating to psychologists' activities
must be identified or clearly recognizable as such.
5.03 Descriptions of Workshops and Non-Degree-Granting
Educational Programs
To the degree to which they exercise control, psychologists
responsible for announcements, catalogs, brochures, or
advertisements describing workshops, seminars, or other non-
degree-granting educational programs ensure that they
accurately describe the audience for which the program is
intended, the educational objectives, the presenters, and the fees
involved.
5.04 Media Presentations
When psychologists provide public advice or comment via print,
Internet, or other electronic transmission, they take precautions
to ensure that statements (1) are based on their professional
knowledge, training, or experience in accord with appropriate
psychological literature and practice; (2) are otherwise
consistent with this Ethics Code; and (3) do not indicate that a
professional relationship has been established with the
recipient. (See also Standard 2.04, Bases for Scientific and
Professional Judgments.)
5.05 Testimonials
Psychologists do not solicit testimonials from current therapy
clients/patients or other persons who because of their particular
circumstances are vulnerable to undue influence.
5.06 In-Person Solicitation
Psychologists do not engage, directly or through agents, in
uninvited in-person solicitation of business from actual or
potential therapy clients/patients or other persons who because
of their particular circumstances are vulnerable to undue
influence. However, this prohibition does not preclude (1)
attempting to implement appropriate collateral contacts for the
purpose of benefiting an already engaged therapy client/patient
or (2) providing disaster or community outreach services.
Section 6: Record Keeping and Fees

143. 6.01 Documentation of Professional and Scientific Work and
Maintenance of Records
Psychologists create, and to the extent the records are under
their control, maintain, disseminate, store, retain, and dispose
of records and data relating to their professional and scientific
work in order to (1) facilitate provision of services later by
them or by other professionals, (2) allow for replication of
research design and analyses, (3) meet institutional
requirements, (4) ensure accuracy of billing and payments, and
(5) ensure compliance with law. (See also Standard 4.01,
Maintaining Confidentiality.)
6.02 Maintenance, Dissemination, and Disposal of Confidential
Records of Professional and Scientific Work
(a) Psychologists maintain confidentiality in creating, storing,
accessing, transferring, and disposing of records under their
control, whether these are written, automated, or in any other
medium. (See also Standards 4.01, Maintaining Confidentiality,
and 6.01, Documentation of Professional and Scientific Work
and Maintenance of Records.)
(b) If confidential information concerning recipients of
psychological services is entered into databases or systems of
records available to persons whose access has not been
consented to by the recipient, psychologists use coding or other
techniques to avoid the inclusion of personal identifiers.
(c) Psychologists make plans in advance to facilitate the
appropriate transfer and to protect the confidentiality of records
and data in the event of psychologists' withdrawal from
positions or practice. (See also Standards 3.12, Interruption of
Psychological Services, and 10.09, Interruption of Therapy.)
6.03 Withholding Records for Nonpayment
Psychologists may not withhold records under their control that
are requested and needed for a client's/patient's emergency
treatment solely because payment has not been received.
6.04 Fees and Financial Arrangements
(a) As early as is feasible in a professional or scientific
relationship, psychologists and recipients of psychological

144. services reach an agreement specifying compensation and
billing arrangements.
(b) Psychologists' fee practices are consistent with law.
(c) Psychologists do not misrepresent their fees.
(d) If limitations to services can be anticipated because of
limitations in financing, this is discussed with the recipient of
services as early as is feasible. (See also Standards 10.09,
Interruption of Therapy, and 10.10, Terminating Therapy.)
(e) If the recipient of services does not pay for services as
agreed, and if psychologists intend to use collection agencies or
legal measures to collect the fees, psychologists first inform the
person that such measures will be taken and provide that person
an opportunity to make prompt payment. (See also
Standards 4.05, Disclosures; 6.03, Withholding Records for
Nonpayment; and 10.01, Informed Consent to Therapy.)
6.05 Barter with Clients/Patients
Barter is the acceptance of goods, services, or other
nonmonetary remuneration from clients/patients in return for
psychological services. Psychologists may barter only if (1) it is
not clinically contraindicated, and (2) the resulting arrangement
is not exploitative. (See also Standards 3.05, Multiple
Relationships, and 6.04, Fees and Financial Arrangements.)
6.06 Accuracy in Reports to Payors and Funding Sources
In their reports to payors for services or sources of research
funding, psychologists take reasonable steps to ensure the
accurate reporting of the nature of the service provided or
research conducted, the fees, charges, or payments, and where
applicable, the identity of the provider, the findings, and the
diagnosis. (See also Standards 4.01, Maintaining
Confidentiality; 4.04, Minimizing Intrusions on Privacy;
and 4.05, Disclosures.)
6.07 Referrals and Fees
When psychologists pay, receive payment from, or divide fees
with another professional, other than in an employer-employee
relationship, the payment to each is based on the services
provided (clinical, consultative, administrative, or other) and is

145. not based on the referral itself. (See also Standard 3.09,
Cooperation with Other Professionals.)
Section 7: Education and Training
7.01 Design of Education and Training Programs
Psychologists responsible for education and training programs
take reasonable steps to ensure that the programs are designed
to provide the appropriate knowledge and proper experiences,
and to meet the requirements for licensure, certification, or
other goals for which claims are made by the program. (See also
Standard 5.03, Descriptions of Workshops and Non-Degree-
Granting Educational Programs.)
7.02 Descriptions of Education and Training Programs
Psychologists responsible for education and training programs
take reasonable steps to ensure that there is a current and
accurate description of the program content (including
participation in required course- or program-related counseling,
psychotherapy, experiential groups, consulting projects, or
community service), training goals and objectives, stipends and
benefits, and requirements that must be met for satisfactory
completion of the program. This information must be made
readily available to all interested parties.
7.03 Accuracy in Teaching
(a) Psychologists take reasonable steps to ensure that course
syllabi are accurate regarding the subject matter to be covered,
bases for evaluating progress, and the nature of course
experiences. This standard does not preclude an instructor from
modifying course content or requirements when the instructor
considers it pedagogically necessary or desirable, so long as
students are made aware of these modifications in a manner that
enables them to fulfill course requirements. (See also
Standard 5.01, Avoidance of False or Deceptive Statements.)
(b) When engaged in teaching or training, psychologists present
psychological information accurately. (See also Standard 2.03,
Maintaining Competence.)
7.04 Student Disclosure of Personal Information
Psychologists do not require students or supervisees to disclose

146. personal information in course- or program-related activities,
either orally or in writing, regarding sexual history, history of
abuse and neglect, psychological treatment, and relationships
with parents, peers, and spouses or significant others except if
(1) the program or training facility has clearly identified this
requirement in its admissions and program materials or (2) the
information is necessary to evaluate or obtain assistance for
students whose personal problems could reasonably be judged to
be preventing them from performing their training- or
professionally related activities in a competent manner or
posing a threat to the students or others.
7.05 Mandatory Individual or Group Therapy
(a) When individual or group therapy is a program or course
requirement, psychologists responsible for that program allow
students in undergraduate and graduate programs the option of
selecting such therapy from practitioners unaffiliated with the
program. (See also Standard 7.02, Descriptions of Education
and Training Programs.)
(b) Faculty who are or are likely to be responsible for
evaluating students' academic performance do not themselves
provide that therapy. (See also Standard 3.05, Multiple
Relationships.)
7.06 Assessing Student and Supervisee Performance
(a) In academic and supervisory relationships, psychologists
establish a timely and specific process for providing feedback to
students and supervisees. Information regarding the process is
provided to the student at the beginning of supervision.
(b) Psychologists evaluate students and supervisees on the basis
of their actual performance on relevant and established program
requirements.
7.07 Sexual Relationships with Students and Supervisees
Psychologists do not engage in sexual relationships with
students or supervisees who are in their department, agency, or
training center or over whom psychologists have or are likely to
have evaluative authority. (See also Standard 3.05, Multiple
Relationships.)

147. Section 8: Research and Publication
8.01 Institutional Approval
When institutional approval is required, psychologists provide
accurate information about their research proposals and obtain
approval prior to conducting the research. They conduct the
research in accordance with the approved research protocol.
8.02 Informed Consent to Research
(a) When obtaining informed consent as required in Standard
3.10, Informed Consent, psychologists inform participants about
(1) the purpose of the research, expected duration, and
procedures; (2) their right to decline to participate and to
withdraw from the research once participation has begun; (3)
the foreseeable consequences of declining or withdrawing; (4)
reasonably foreseeable factors that may be expected to
influence their willingness to participate such as potential risks,
discomfort, or adverse effects; (5) any prospective research
benefits; (6) limits of confidentiality; (7) incentives for
participation; and (8) whom to contact for questions about the
research and research participants' rights. They provide
opportunity for the prospective participants to ask questions and
receive answers. (See also Standards 8.03, Informed Consent for
Recording Voices and Images in Research; 8.05, Dispensing
with Informed Consent for Research; and 8.07, Deception in
Research.)
(b) Psychologists conducting intervention research involving
the use of experimental treatments clarify to participants at the
outset of the research (1) the experimental nature of the
treatment; (2) the services that will or will not be available to
the control group(s) if appropriate; (3) the means by which
assignment to treatment and control groups will be made; (4)
available treatment alternatives if an individual does not wish to
participate in the research or wishes to withdraw once a study
has begun; and (5) compensation for or monetary costs of
participating including, if appropriate, whether reimbursement
from the participant or a third-party payor will be sought. (See

148. also Standard 8.02a, Informed Consent to Research
.)
8.03 Informed Consent for Recording Voices and Images in
Research
Psychologists obtain informed consent from research
participants prior to recording their voices or images for data
collection unless (1) the research consists solely of naturalistic
observations in public places, and it is not anticipated that the
recording will be used in a manner that could cause personal
identification or harm, or (2) the research design includes
deception, and consent for the use of the recording is obtained
during debriefing. (See also Standard 8.07, Deception in
Research.)
8.04 Client/Patient, Student, and Subordinate Research
Participants
(a) When psychologists conduct research with clients/patients,
students, or subordinates as participants, psychologists take
steps to protect the prospective participants from adverse
consequences of declining or withdrawing from participation.
(b) When research participation is a course requirement or an
opportunity for extra credit, the prospective participant is given
the choice of equitable alternative activities.
8.05 Dispensing with Informed Consent for Research
Psychologists may dispense with informed consent only (1)
where research would not reasonably be assumed to create
distress or harm and involves (a) the study of normal
educational practices, curricula, or classroom management
methods conducted in educational settings; (b) only anonymous
questionnaires, naturalistic observations, or archival research
for which disclosure of responses would not place participants
at risk of criminal or civil liability or damage their financial
standing, employability, or reputation, and confidentiality is
protected; or (c) the study of factors related to job or
organization effectiveness conducted in organizational settings
for which there is no risk to participants' employability, and
confidentiality is protected or (2) where otherwise permitted by

149. law or federal or institutional regulations.
8.06 Offering Inducements for Research Participation
(a) Psychologists make reasonable efforts to avoid offering
excessive or inappropriate financial or other inducements for
research participation when such inducements are likely to
coerce participation.
(b) When offering professional services as an inducement for
research participation, psychologists clarify the nature of the
services, as well as the risks, obligations, and limitations. (See
also Standard 6.05, Barter with Clients/Patients.)
8.07 Deception in Research
(a) Psychologists do not conduct a study involving deception
unless they have determined that the use of deceptive
techniques is justified by the study's significant prospective
scientific, educational, or applied value and that effective
nondeceptive alternative procedures are not feasible.
(b) Psychologists do not deceive prospective participants about
research that is reasonably expected to cause physical pain or
severe emotional distress.
(c) Psychologists explain any deception that is an integral
feature of the design and conduct of an experiment to
participants as early as is feasible, preferably at the conclusion
of their participation, but no later than at the conclusion of the
data collection, and permit participants to withdraw their data.
(See also Standard 8.08, Debriefing.)
8.08 Debriefing
(a) Psychologists provide a prompt opportunity for participants
to obtain appropriate information about the nature, results, and
conclusions of the research, and they take reasonable steps to
correct any misconceptions that participants may have of which
the psychologists are aware.
(b) If scientific or humane values justify delaying or
withholding this information, psychologists take reasonable
measures to reduce the risk of harm.
(c) When psychologists become aware that research procedures
have harmed a participant, they take reasonable steps to

150. minimize the harm.
8.09 Humane Care and Use of Animals in Research
(a) Psychologists acquire, care for, use, and dispose of animals
in compliance with current federal, state, and local laws and
regulations, and with professional standards.
(b) Psychologists trained in research methods and experienced
in the care of laboratory animals supervise all procedures
involving animals and are responsible for ensuring appropriate
consideration of their comfort, health, and humane treatment.
(c) Psychologists ensure that all individuals under their
supervision who are using animals have received instruction in
research methods and in the care, maintenance, and handling of
the species being used, to the extent appropriate to their role.
(See also Standard 2.05, Delegation of Work to Others.)
(d) Psychologists make reasonable efforts to minimize the
discomfort, infection, illness, and pain of animal subjects.
(e) Psychologists use a procedure subjecting animals to pain,
stress, or privation only when an alternative procedure is
unavailable and the goal is justified by its prospective
scientific, educational, or applied value.
(f) Psychologists perform surgical procedures under appropriate
anesthesia and follow techniques to avoid infection and
minimize pain during and after surgery.
(g) When it is appropriate that an animal's life be terminated,
psychologists proceed rapidly, with an effort to minimize pain
and in accordance with accepted procedures.
8.10 Reporting Research Results
(a) Psychologists do not fabricate data. (See also
Standard 5.01a, Avoidance of False or Deceptive Statements.)
(b) If psychologists discover significant errors in their
published data, they take reasonable steps to correct such errors
in a correction, retraction, erratum, or other appropriate
publication means.
8.11 Plagiarism
Psychologists do not present portions of another's work or data
as their own, even if the other work or data source is cited

151. occasionally.
8.12 Publication Credit
(a) Psychologists take responsibility and credit, including
authorship credit, only for work they have actually performed or
to which they have substantially contributed. (See also
Standard 8.12b, Publication Credit.)
(b) Principal authorship and other publication credits accurately
reflect the relative scientific or professional contributions of the
individuals involved, regardless of their relative status. Mere
possession of an institutional position, such as department
chair, does not justify authorship credit. Minor contributions to
the research or to the writing for publications are acknowledged
appropriately, such as in footnotes or in an introductory
statement.
(c) Except under exceptional circumstances, a student is listed
as principal author on any multiple-authored article that is
substantially based on the student's doctoral dissertation.
Faculty advisors discuss publication credit with students as
early as feasible and throughout the research and publication
process as appropriate. (See also Standard 8.12b, Publication
Credit.)
8.13 Duplicate Publication of Data
Psychologists do not publish, as original data, data that have
been previously published. This does not preclude republishing
data when they are accompanied by proper acknowledgment.
8.14 Sharing Research Data for Verification
(a) After research results are published, psychologists do not
withhold the data on which their conclusions are based from
other competent professionals who seek to verify the
substantive claims through reanalysis and who intend to use
such data only for that purpose, provided that the
confidentiality of the participants can be protected and unless
legal rights concerning proprietary data preclude their release.
This does not preclude psychologists from requiring that such
individuals or groups be responsible for costs associated with
the provision of such information.

152. (b) Psychologists who request data from other psychologists to
verify the substantive claims through reanalysis may use shared
data only for the declared purpose. Requesting psychologists
obtain prior written agreement for all other uses of the data.
8.15 Reviewers
Psychologists who review material submitted for presentation,
publication, grant, or research proposal review respect the
confidentiality of and the proprietary rights in such information
of those who submitted it.
Section 9: Assessment
9.01 Bases for Assessments
(a) Psychologists base the opinions contained in their
recommendations, reports, and diagnostic or evaluative
statements, including forensic testimony, on information and
techniques sufficient to substantiate their findings. (See also
Standard 2.04, Bases for Scientific and Professional
Judgments.)
(b) Except as noted in 9.01c, psychologists provide opinions of
the psychological characteristics of individuals only after they
have conducted an examination of the individuals adequate to
support their statements or conclusions. When, despite
reasonable efforts, such an examination is not practical,
psychologists document the efforts they made and the result of
those efforts, clarify the probable impact of their limited
information on the reliability and validity of their opinions, and
appropriately limit the nature and extent of their conclusions or
recommendations. (See also Standards 2.01, Boundaries of
Competence, and 9.06, Interpreting Assessment Results.)
(c) When psychologists conduct a record review or provide
consultation or supervision and an individual examination is not
warranted or necessary for the opinion, psychologists explain
this and the sources of information on which they based their
conclusions and recommendations.
9.02 Use of Assessments
(a) Psychologists administer, adapt, score, interpret, or use
assessment techniques, interviews, tests, or instruments in a

153. manner and for purposes that are appropriate in light of the
research on or evidence of the usefulness and proper application
of the techniques.
(b) Psychologists use assessment instruments whose validity
and reliability have been established for use with members of
the population tested. When such validity or reliability has not
been established, psychologists describe the strengths and
limitations of test results and interpretation.
(c) Psychologists use assessment methods that are appropriate
to an individual's language preference and competence, unless
the use of an alternative language is relevant to the assessment
issues.
9.03 Informed Consent in Assessments
(a) Psychologists obtain informed consent for assessments,
evaluations, or diagnostic services, as described in Standard
3.10, Informed Consent, except when (1) testing is mandated by
law or governmental regulations; (2) informed consent is
implied because testing is conducted as a routine educational,
institutional, or organizational activity (e.g., when participants
voluntarily agree to assessment when applying for a job); or (3)
one purpose of the testing is to evaluate decisional capacity.
Informed consent includes an explanation of the nature and
purpose of the assessment, fees, involvement of third parties,
and limits of confidentiality and sufficient opportunity for the
client/patient to ask questions and receive answers.
(b) Psychologists inform persons with questionable capacity to
consent or for whom testing is mandated by law or
governmental regulations about the nature and purpose of the
proposed assessment services, using language that is reasonably
understandable to the person being assessed.
(c) Psychologists using the services of an interpreter obtain
informed consent from the client/patient to use that interpreter,
ensure that confidentiality of test results and test security are
maintained, and include in their recommendations, reports, and
diagnostic or evaluative statements, including forensic
testimony, discussion of any limitations on the data obtained.

154. (See also Standards 2.05, Delegation of Work to Others; 4.01,
Maintaining Confidentiality; 9.01, Bases for Assessments; 9.06,
Interpreting Assessment Results; and 9.07, Assessment by
Unqualified Persons.)
9.04 Release of Test Data
(a) The term test data refers to raw and scaled scores,
client/patient responses to test questions or stimuli, and
psychologists' notes and recordings concerning client/patient
statements and behavior during an examination. Those portions
of test materials that include client/patient responses are
included in the definition of test data. Pursuant to a
client/patient release, psychologists provide test data to the
client/patient or other persons identified in the release.
Psychologists may refrain from releasing test data to protect a
client/patient or others from substantial harm or misuse or
misrepresentation of the data or the test, recognizing that in
many instances release of confidential information under these
circumstances is regulated by law. (See also Standard 9.11,
Maintaining Test Security.)
(b) In the absence of a client/patient release, psychologists
provide test data only as required by law or court order.
9.05 Test Construction
Psychologists who develop tests and other assessment
techniques use appropriate psychometric procedures and current
scientific or professional knowledge for test design,
standardization, validation, reduction or elimination of bias, and
recommendations for use.
9.06 Interpreting Assessment Results
When interpreting assessment results, including automated
interpretations, psychologists take into account the purpose of
the assessment as well as the various test factors, test-taking
abilities, and other characteristics of the person being assessed,
such as situational, personal, linguistic, and cultural
differences, that might affect psychologists' judgments or
reduce the accuracy of their interpretations. They indicate any
significant limitations of their interpretations. (See also

155. Standards 2.01b and c, Boundaries of Competence, and 3.01,
Unfair Discrimination.)
9.07 Assessment by Unqualified Persons
Psychologists do not promote the use of psychological
assessment techniques by unqualified persons, except when such
use is conducted for training purposes with appropriate
supervision. (See also Standard 2.05, Delegation of Work to
Others.)
9.08 Obsolete Tests and Outdated Test Results
(a) Psychologists do not base their assessment or intervention
decisions or recommendations on data or test results that are
outdated for the current purpose.
(b) Psychologists do not base such decisions or
recommendations on tests and measures that are obsolete and
not useful for the current purpose.
9.09 Test Scoring and Interpretation Services
(a) Psychologists who offer assessment or scoring services to
other professionals accurately describe the purpose, norms,
validity, reliability, and applications of the procedures and any
special qualifications applicable to their use.
(b) Psychologists select scoring and interpretation services
(including automated services) on the basis of evidence of the
validity of the program and procedures as well as on other
appropriate considerations. (See also Standard 2.01b and c,
Boundaries of Competence.)
(c) Psychologists retain responsibility for the appropriate
application, interpretation, and use of assessment instruments,
whether they score and interpret such tests themselves or use
automated or other services.
9.10 Explaining Assessment Results
Regardless of whether the scoring and interpretation are done
by psychologists, by employees or assistants, or by automated
or other outside services, psychologists take reasonable steps to
ensure that explanations of results are given to the individual or
designated representative unless the nature of the relationship
precludes provision of an explanation of results (such as in

156. some organizational consulting, preemployment or security
screenings, and forensic evaluations), and this fact has been
clearly explained to the person being assessed in advance.
9.11 Maintaining Test Security
The term test materials refers to manuals, instruments,
protocols, and test questions or stimuli and does not include test
data as defined in Standard 9.04, Release of Test Data.
Psychologists make reasonable efforts to maintain the integrity
and security of test materials and other assessment techniques
consistent with law and contractual obligations, and in a manner
that permits adherence to this Ethics Code.
Section 10: Therapy
10.01 Informed Consent to Therapy
(a) When obtaining informed consent to therapy as required in
Standard 3.10, Informed Consent, psychologists inform
clients/patients as early as is feasible in the therapeutic
relationship about the nature and anticipated course of therapy,
fees, involvement of third parties, and limits of confidentiality
and provide sufficient opportunity for the client/patient to ask
questions and receive answers. (See also Standards 4.02,
Discussing the Limits of Confidentiality, and 6.04, Fees and
Financial Arrangements.)
(b) When obtaining informed consent for treatment for which
generally recognized techniques and procedures have not been
established, psychologists inform their clients/patients of the
developing nature of the treatment, the potential risks involved,
alternative treatments that may be available, and the voluntary
nature of their participation. (See also Standards 2.01e,
Boundaries of Competence, and 3.10, Informed Consent.)
(c) When the therapist is a trainee and the legal responsibility
for the treatment provided resides with the supervisor, the
client/patient, as part of the informed consent procedure, is
informed that the therapist is in training and is being supervised
and is given the name of the supervisor.
10.02 Therapy Involving Couples or Families
(a) When psychologists agree to provide services to several

157. persons who have a relationship (such as spouses, significant
others, or parents and children), they take reasonable steps to
clarify at the outset (1) which of the individuals are
clients/patients and (2) the relationship the psychologist will
have with each person. This clarification includes the
psychologist's role and the probable uses of the services
provided or the information obtained. (See also Standard 4.02,
Discussing the Limits of Confidentiality.)
(b) If it becomes apparent that psychologists may be called on
to perform potentially conflicting roles (such as family therapist
and then witness for one party in divorce proceedings),
psychologists take reasonable steps to clarify and modify, or
withdraw from, roles appropriately. (See also Standard 3.05c,
Multiple Relationships.)
10.03 Group Therapy
When psychologists provide services to several persons in a
group setting, they describe at the outset the roles and
responsibilities of all parties and the limits of confidentiality.
10.04 Providing Therapy to Those Served by Others
In deciding whether to offer or provide services to those already
receiving mental health services elsewhere, psychologists
carefully consider the treatment issues and the potential
client's/patient's welfare. Psychologists discuss these issues
with the client/patient or another legally authorized person on
behalf of the client/patient in order to minimize the risk of
confusion and conflict, consult with the other service providers
when appropriate, and proceed with caution and sensitivity to
the therapeutic issues.
10.05 Sexual Intimacies with Current Therapy Clients/Patients
Psychologists do not engage in sexual intimacies with current
therapy clients/patients.
10.06 Sexual Intimacies with Relatives or Significant Others of
Current Therapy Clients/Patients
Psychologists do not engage in sexual intimacies with
individuals they know to be close relatives, guardians, or
significant others of current clients/patients. Psychologists do

158. not terminate therapy to circumvent this standard.
10.07 Therapy with Former Sexual Partners
Psychologists do not accept as therapy clients/patients persons
with whom they have engaged in sexual intimacies.
10.08 Sexual Intimacies with Former Therapy Clients/Patients
(a) Psychologists do not engage in sexual intimacies with
former clients/patients for at least two years after cessation or
termination of therapy.
(b) Psychologists do not engage in sexual intimacies with
former clients/patients even after a two-year interval except in
the most unusual circumstances. Psychologists who engage in
such activity after the two years following cessation or
termination of therapy and of having no sexual contact with the
former client/patient bear the burden of demonstrating that there
has been no exploitation, in light of all relevant factors,
including (1) the amount of time that has passed since therapy
terminated; (2) the nature, duration, and intensity of the
therapy; (3) the circumstances of termination; (4) the
client's/patient's personal history; (5) the client's/patient's
current mental status; (6) the likelihood of adverse impact on
the client/patient; and (7) any statements or actions made by the
therapist during the course of therapy suggesting or inviting the
possibility of a posttermination sexual or romantic relationship
with the client/patient. (See also Standard 3.05, Multiple
Relationships.)
10.09 Interruption of Therapy
When entering into employment or contractual relationships,
psychologists make reasonable efforts to provide for orderly
and appropriate resolution of responsibility for client/patient
care in the event that the employment or contractual
relationship ends, with paramount consideration given to the
welfare of the client/patient. (See also Standard 3.12,
Interruption of Psychological Services.)
10.10 Terminating Therapy
(a) Psychologists terminate therapy when it becomes reasonably
clear that the client/patient no longer needs the service, is not

159. likely to benefit, or is being harmed by continued service.
(b) Psychologists may terminate therapy when threatened or
otherwise endangered by the client/patient or another person
with whom the client/patient has a relationship.
(c) Except where precluded by the actions of clients/patients or
third-party payors, prior to termination psychologists provide
pretermination counseling and suggest alternative service
providers as appropriate.
History and Effective Date
The American Psychological Association’s Council of
Representatives adopted this version of the APA Ethics Code
during its meeting on Aug. 21, 2002. The Code became
effective on June 1, 2003. The Council of Representatives
amended this version of the Ethics Code on Feb. 20, 2010,
effective June 1, 2010, and on Aug. 3, 2016, effective Jan. 1,
2017. Inquiries concerning the substance or interpretation of
the APA Ethics Code should be addressed to the Director,
Office of Ethics, American Psychological Association, 750 First
St. NE, Washington, DC 20002-4242. The standards in this
Ethics Code will be used to adjudicate complaints brought
concerning alleged conduct occurring on or after the effective
date. Complaints will be adjudicated on the basis of the version
of the Ethics Code that was in effect at the time the conduct
occurred.
The APA has previously published its Ethics Code as follows:
American Psychological Association. (1953). Ethical standards
of psychologists. Washington, DC: Author.
American Psychological Association. (1959). Ethical standards
of psychologists. American Psychologist, 14, 279-282.
American Psychological Association. (1963). Ethical standards
of psychologists. American Psychologist, 18, 56-60.
American Psychological Association. (1968). Ethical standards
of psychologists. American Psychologist, 23, 357-361.
American Psychological Association. (1977, March). Ethical
standards of psychologists. APAMonitor, 22-23.
American Psychological Association. (1979). Ethical standards

160. of psychologists. Washington, DC: Author.
American Psychological Association. (1981). Ethical principles
of psychologists. American Psychologist, 36, 633-638.
American Psychological Association. (1990). Ethical principles
of psychologists (Amended June 2, 1989). American
Psychologist, 45, 390-395.
American Psychological Association. (1992). Ethical principles
of psychologists and code of conduct. American
Psychologist, 47, 1597-1611.
American Psychological Association. (2002). Ethical principles
of psychologists and code of conduct. American
Psychologist, 57, 1060-1073.
American Psychological Association. (2010). 2010 amendments
to the 2002 “Ethical Principles of Psychologists and Code of
Conduct.” American Psychologist, 65, 493.
American Psychological Association. (2016). Revision of
ethical standard 3.04 of the “Ethical Principles of Psychologists
and Code of Conduct” (2002, as amended 2010). American
Psychologist, 71, 900.
Request copies of the APA's Ethical Principles of Psychologists
and Code of Conduct from the APA Order Department, 750 First
St. NE, Washington, DC 20002-4242, or phone (202) 336-5510.
Amendments to the 2002 “Ethical Principles of Psychologists
and Code of Conduct” in 2010 and 2016
2010 Amendments
Introduction and Applicability
If psychologists’ ethical responsibilities conflict with law,
regulations, or other governing legal authority, psychologists
make known their commitment to this Ethics Code and take
steps to resolve the conflict in a responsible manner. If the
conflict is unresolvable via such means, psychologists may
adhere to the requirements of the law, regulations, or other
governing authority in keeping with basic principles of human
rights.
1.02 Conflicts Between Ethics and Law, Regulations, or Other
Governing Legal Authority

161. If psychologists’ ethical responsibilities conflict with law,
regulations, or other governing legal authority,
psychologists clarify the nature of the conflict, make known
their commitment to the Ethics Code, and take reasonable steps
to resolve the conflict consistent with the General Principles
and Ethical Standards of the Ethics Code. If the conflict is
unresolvable via such means, psychologists may adhere to the
requirements of the law, regulations, or other governing legal
authority.Under no circumstances may this standard be used to
justify or defend violating human rights.
1.03 Conflicts Between Ethics and Organizational Demands
If the demands of an organization with which psychologists are
affiliated or for whom they are working are inconflict with this
Ethics Code, psychologists clarify the nature of the conflict,
make known their commitment to the Ethics Code, and to the
extent feasible, resolve the conflict in a way that permits
adherence to the Ethics Code.take reasonable steps to resolve
the conflict consistent with the General Principles and Ethical
Standards of the Ethics Code. Under no circumstances may this
standard be used to justify or defend violating human rights.
2016 Amendment
3.04 Avoiding Harm(a) Psychologists take reasonable steps to
avoid harming their clients/patients, students, supervisees,
research participants, organizational clients, and others with
whom they work, and to minimize harm where it is foreseeable
and unavoidable.
(b) Psychologists do not participate in, facilitate, assist, or
otherwise engage in torture, defined as any act by which severe
pain or suffering, whether physical or mental, is intentionally
inflicted on a person, or in any other cruel, inhuman, or
degrading behavior that violates 3.04(a).

162. PSY699: Master of Arts in Psychology Capstone Week Four
Discussion Case File
Case Summary
Client 1: Tina, a 36-year-old HIV-positive Latina woman
Client 2: Tina’s daughter, 12-year-old Victoria (also HIV
positive)
Tina became infected through a former boyfriend who had a
history of intravenous drug use. Tina gave birth to an HIV-
positive daughter, Victoria. Tina does not want Victoria to
know that either of them has HIV.
Victoria is now 12 years old and has been told by her mother
that she takes medications for “a problem in her blood.”
Recently, Victoria stated that she does not like taking the
medication and occasionally misses doses. The clinic staff has
raised the issue of whether Victoria should be told about her
diagnosis. They’ve warned Tina that in the near future, Victoria
will be at an age at which girls often become more interested in
boys or sexual behavior. The clinic’s therapist feels that if
Victoria knew her diagnosis she might be more adherent to her
regimen of medications.
However, Tina absolutely does not want her daughter to know.
Tina believes Victoria is still too young and will be emotionally
devastated. Tina believes that it is her responsibility — and
only her responsibility as a mother — to “protect” her child,
and that her daughter is “not ready” to know. Tina also believes
that Victoria is “a good girl” and will not be sexually active
until she is married.

163. The clinic’s therapist thinks Tina’s guilt about having
transmitted the virus to her daughter is causing her to take this
stance. Still, the clinic staff is concerned and wants Tina to
reconsider. This situation presents several ethical dilemmas and
requires further consultation.