Issues in qualitative methods and analysis: Maintaining proper rigor in ethics when working with LGBTQ+ youth.

1. 
Issues in Ethics when
researching with LGBTQ+
Youth Populations
Stephanie Gariscsak
EDRD 6000
March 9th, 2017

2. LGBTQ+ Research Landscape
 Prior to the 1970’s: Homosexuality viewed as an Illness, thus:
 Belief that sexual orientation was a binary construct
 Belief that sexual orientation is based solely on sexual activity
 Belief that sexual orientation forms at a young age and is unchanging (Bettinger, T. V., 2010)
 1973-1990s:
 The removal of homosexuality form the list of mental disorders by the American Psychological Association
 Sexual orientation understood to multiple identity intersections beyond sexual behaviours such as emotional-
attachment, self-identification and current relationship status (Bettinger, T. V., 2010)
 Homophobia institutionalized via the 1980s HIV/AIDS crisis (Farmer, 2013)
 2010+
 Lack of trust in scientific community from LGBTQ+ community
 Call for improvements in Shared Decision Making - when patients and clinicians work together to reach care
decisions that are both medically sound and responsive to patients’ preferences and values in order to improve
the dissidence between researchers and the LGBTQ+ community (DeMeeseter et al., 2016)

3. The 1980s HIV/AIDS Crisis
 The HIV/AIDS crisis of the !980s provides for a
strong demonstration institutionalized structural
homophobia on behalf of global government
systems
 Referring to HIV/AIDS as a ‘Gay mans disease’
caused heterosexual communities to further
shun the LGBTQ+ community, alienating them
 This crisis holds a significant impact on LGBTQ+
youth, as it demonstrates that historical
government and health systems actively
suppressed their community, and arguably still
participate in this suppression today
(Farmer, 2013)
Timeline
1981: June, The first case of AIDS, thought to be
Pneumocystis carinii pneumonia (PCP) at the time
are reported in 5 gay men in Los Angeles
1981: December, a total of 270 cases, then referred
to as GRID (Gay-Related Immune Deficiency) are
reported
1982: September, CDC uses the term “AIDS”
(Acquired Immune Deficiency Syndrome) for the
first time, and releases the first case definition of
AIDS
1985: Then president of the USA, Regan finally
speaks about HIV/AIDS, stating that funding will
eventually be sent towards initiatives against the
disease
1987: March, ACT UP, HIV/AIDS activist group which
works s in order to demand legislation and research
dollars for HIV/AIDS endeavors
1988: Surgeon General, C. Everett Koop, goes
against Regan's policy and mails AIDS information
and condoms to every U.S. household

4. Shared Decision Making
 Shared Decision Making (SDM) principles reflects Capacity Development’s emphasis on Community-Based
research practices and is a tool that researchers and clinicians alike can use in order to improve trust within
minority populations, and thus strengthen ethical considerations.
 Allow for researchers and clinicians to engage with research groups as well as clients and patients in
meaningful ways .In order to facilitate this, six drivers act through four mechanisms to improve clinician and
patient/family activation and ultimately shared decision making. The six mechanisms include: workflow,
health information technology, organizational culture, resources and clinic environment, training and
education, incentives. The four mechanisms pertain more to ethical considerations, and include:
1. Continuity: Coordination across team members, visits, and organizations.
2. Ease of SDM: Clinicians and patients are more likely to initiate SDM when it is integrated into
expectations, culture, and day-to-day processes as a part of usual care.
3. Knowledge: Specific knowledge and skill including communication, SDM methods, cultural
competence, and insight into factors affecting care. This applies to both clinicians and patients
4. Attitudes: Patients and clinicians must also see value in SDM and expect that it will work.
 The combination of organizational drivers and mechanisms leads to shared decision making which focuses on
Discussing, Debating, and Deciding on an outcome for research intent. This conceptual model is excellent for
ensuring ethics when engaging in research endeavors with LGBTQ+ youth specifically as it demands and works
alongside the ethical expectations of free, prior and informed consent (DeMeeseter et al., 2016).

5. 1. Research Integrity Case
 Definition: the use of honest and verifiable
methods in proposing, performing, and
evaluating research, consisting of: honesty,
accuracy, efficiency, and objectivity (National
Institutes of Health, 2013)
 Many sexual minorities are justifiably
suspicious of “research” because it has
traditionally labeled them as sick or deviant
(Herrick, 1991)
 How can researchers overcome this?
 Acknowledge limitations in research
being performed
 Recognize ways in which popular media
may miss-interpret findings and
(Meezan, & Martin, 2009)
 Grace’s article discusses the severity that conversation
therapy has on LGBTQ+ youth
 Misguided research for the purpose of conversion therapy
 Lack of research integrity exists today in attempts to disguise
personal beliefs as ‘good science, such as in forms of
“reparative therapy” and “transformational ministry”
 Research goal being to “convert” or “transform” sexual
minorities into heterosexuals

6. 2. Participant Protection Case
 Definition: Ensuring special attention and vigilance
to ensure confidentiality and to prevent
exploitation
 Research in this area might also “touch upon
painful life events [which] may generate
considerable emotion and even distress”
(deMarrais & Tisdale, 2002, p. 191), in both
researchers and participants
Gerrard, N. "Some painful experiences
of a white therapist doing research
with women of colour." Racism in the
lives of women: Testimony, theory,
and guides to practice (1995): 53-63.
 Gerrard, a White researcher whom worked with women
of colour was initially taken aback by the surprised by
the reactions of some of the participants within the
study, who refer to the conducted research as abuse
 Created feelings of exploitation and abuse due to lack of
creation of a relationship between the researcher and
participants
 “The practice of researchers parachuting into
peoples’ lives, interfering, raising painful old
feelings, and then vanishing, leaving the
participants to deal with unresolved feelings
alone and isolated” (p. 62).

7. 3. Exclusion Case
 Definition: Where research is designed to
survey a number of living research subjects
because of their involvement in activities that
are not specific to particular groups,
researchers shall not exclude prospective or
actual research subjects on the basis of such
attributes as culture, religion, race, mental or
physical disability, sexual orientation, ethnicity,
sex or age, unless there is a valid reason for
doing so. (TCPS2, article 5.1)
 Inappropriate Exclusion: as part of TCPS2
inclusion of minority populations such as
women and members of the in research
advances the commitment to Justice as well as
research integrity by:
 Improves the generalizability of research
findings to the general population where
that is a goal of the research,
 Ensures that where possible, majority
and minority populations benefit equally
from research.
 Bennett and Battle’s 2001 article outline the negative
repercussions of exclusion within research
 It is important to remember that the LGBTQ spectrum is
comprised of numerous heterogeneous communities
consisting of individuals with overlapping identities (Croom,
2000).
 Racial and ethnic minority individuals who are also
members of sexual minority groups often feel they must
choose one identity over another or straddle two worlds
 This study discusses the fact that individuals of multiple
minority identities are often forced to abandon there
intersecting identity in order to find a sense of belonging
within a community

8. 4. Online Data Collection Case
 Technology is a consistent variable within youth’s everyday lives, and thus is of obvious interest to
researchers when considering working with youth
 Youth-inclusive research is less common than adult research because of ethical concerns (e.g., parental
permission). When a rigorous ethical protocol is in place, it is possible to safely implement a sensitive and
sexual identity-explicit intervention with sexual minority youth as young as 14 years of age (Ybarra et al.,
2016)
 A study completed by Ybarra et al. on online health promotion for male gay youth offers a series of LGBTQ+
specific ethical considerations for online platforms
 Obtaining informed assent with an online protocol: Having an in person or telephone conversation
with potential participants to gauge and ensure participants understand the assent
 Obtaining informed assent from a group with diminished autonomy(i.e., children).: Consistently use
easy-to-understand language
 Ensuring privacy and confidentiality: create a self-safety assessment to help youth determine whether
they could take part in the study safely.
 Fair distribution of benefits and burdens of the study: Ensure that research advancements are
provided to those who can benefit from them, and ensure that research should involve persons from
groups who are likely to benefit from subsequent applications of the research

9. Points of Discussion
 Identifying as a minority population stems beyond sexual
identity and permeates into identities such as race, class,
gender, ability, etc. How will working alongside minority
populations influence your research?
 What steps will you take to ensure your research practices
remain ethical when working alongside minority populations?

10. References
Bennett, M., & Battle, J. (2001). We can see them, but we can’t hear them”: LGBT members of African American families. Queer families, queer
politics: Challenging culture and the state, 53-67.
Bettinger, T. V. (2010). Ethical and methodological complexities in research involving sexual minorities. New Horizons in Adult Education and
Human Resource Development, 24(1), 43-58.
Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada,and Social Sciences and Humanities
Research Council of Canada, Tri-Council Policy Statement: EthicalConduct for Research Involving Humans, December 2014.
Croom, G. L. (2000). Lesbian, gay, and bisexual people of color: A challenge to representative sampling in empirical research. In B. Greene & G.
L. Croom (Eds.), Education, research, and practice in lesbian, gay, bisexual, and transgendered psychology: A resource manual(pp.
263-281). Thousand Oaks, CA: Sage.
deMarrais, K., & Tisdale, K. (2002). What happens when researchers inquire into difficult emotions? Reflections on studying women's anger
through qualitative interviews. Educational Psychologist, 37(2), 115-123.
DeMeester, R. H., Lopez, F. Y., Moore, J. E., Cook, S. C., & Chin, M. H. (2016). A model of organizational context and shared decision making:
Application to LGBT racial and ethnic minority patients. Journal of General Internal Medicine, 31(6), 651-662. doi:10.1007/
s11606-016-3608-3
Farmer, P. (2013). Reimagining global health: an introduction. Berkeley: Univ. of California Press.
Gerrard, N. "Some painful experiences of a white therapist doing research with women of colour." Racism in the lives of women: Testimony,
theory, and guides to practice (1995): 53-63.
Grace, A. P. (2002). “Transformational ministry” and “reparative therapy”: Transformative learning gone awry. In J. C. Pettitt (Ed.), Proceedings
of the 43rd Annual Adult Education Research Conference (pp. 123-128). Raleigh: North Carolina State University.
Herek, G. M., Kimmel, D. C., Amaro, H., & Melton, G. B. (1991). Avoiding heterosexist bias in psychological research. American Psychologist,
44(9), 957-963.
Meezan, W., & Martin, J. I. (Eds.). (2009). Handbook of research with lesbian, gay, bisexual, and transgender populations. New York:
Routledge.
National Institutes of Health. (2013, June 13). What is Research Integrity? Retrieved March 02, 2017, from https://grants.nih.gov/grants/
research_integrity/whatis.htm
Parks, C. A., Hughes, T. L., & Werkmeister-Rolaz, L. (2009). Defining sexual identity and sexual orientation in research with lesbians, gay men
and bisexuals. In W. Meezan & J. I. Martin (Eds.), Handbook of research with lesbian, gay, bisexual, and transgender populations
(pp. 71-99). New York: Routledge.
Ybarra, M., Prescott, T., Phillips, G., Parsons, J., Bull, S., & Mustanski, B. (2016). Ethical considerations in recruiting online and implementing a
text messaging-based HIV prevention program with gay, bisexual, and queer adolescent males. Journal of Adolescent Health,
59(1), 44-49. doi:10.1016/j.jadohealth.2016.03.020