2. The forty year, infamous, albeit abhorrent racial
experimentation impacted medical research and
medical practices, ultimately facilitating the need for
informed consent, while inciting the continuous
mistrust of the medical community by minorities, still
relevant today, and overtly revealed ethical biases
towards race, culture, and class within our society.
3.
4.
5. • The “study” was established by the United States
Public Health Service.
• The experiment took place over a 40 year period of
time; 1932 – 1972.
• Ultimately becoming the longest non-therapeutic
experiment on humans.
6. • The purpose of the study/experiment was to obtain
the affects of syphilis on the human body.
• "The study was conducted to determine from
autopsies what the disease does to the human
body.”- Jean Heller (1972)
7. • “As long as syphilis was so prevalent in Macon
and most of the blacks went untreated throughout
life, it seemed only natural to Clark that it would
be valuable to observe the consequences” –
Brandt 1997
8. • Participants:
– 600 African-American male sharecroppers from
Tuskegee, Alabama were selected as
participants.
– 399 of the participants selected were suffering
from a stage of syphilis.
11. • Although Penicillin was discovered as a viable
treatment for syphilis during the ongoing 40 year
study, researchers had no intention of treating the
infected subjects with the medication.
12. • Viewing the long-term effects of syphilis
remained the primary objective, resulting in the
suffering, spreading, and the ultimate death
from non-treatment.
13. • Final Numbers:
– 28 men died directly from syphilis.
– 100 men died from complications related to syphilis.
– 40 wives were infected with syphilis.
– 19 children of the participants were born with
congenital syphilis.
14. • African-American Nurse Eunice Rivers played a
primary role for nearly 40 years in the
experimentation of 399 African-American men.
– “Walking the messy middle ground’ between her superiors
and her patients, and her resulting feelings of defiance
and self-doubt.”-Sarah Ramsey (1998)
15. • Opinions vary on Nurse Rivers’ intentions.
– Some believe Nurse Rivers was simply afraid to question
authority, remaining obedient to superiors.
– Others believe she was a trader to her race, a villain.
– Most feel she felt a lack of power and understanding.
16. • The significance of Nurse Rivers’ role in the
Tuskegee Study/Experiment was developed into a
movie, “Miss Evers’ Boys”.
• The title character in “Miss Evers’ Boys”, played by
Alfre Woodard, was based on real life Tuskegee
collaborator, African-American Nurse Eunice
Rivers.
17. 1997 movie based on the true story
of the four decades of the Tuskegee
Syphilis Study.
The movie won an Emmy for
“Outstanding Made for Television
Movie”
The movie was nominated for a
Golden Globe Award in the category
- “Best Mini-Series or Motion Picture
Made for TV”
Written by: Walter Bernstein
Produced by: Derek Kavanagh & Kip Konwiser
Starring: Alfre Woodard
18. • UNIFORMED CONSENT
– Participants were told they were receiving free
medical care.
– Participants received placebo drugs only.
– Health care professionals did NOT inform
participants of severity of disease or potential
results from lack of treatment.
– Physicians purposefully misinformed
patients/participants in an effort to block alternate,
helpful treatment.
19. • RACIAL AND CLASS BOUNDARIES CROSSED
– Experiment completed on 399 African-American
men / ZERO Caucasian test subjects.
– Researchers, physicians purposefully “recruited”
African-American men via misleading flyers.
– Once penicillin was determined to be a viable cure
for syphilis, Tuskegee subjects were still untreated,
leaving many to transfer the disease, suffer and die.
20. • Many African-Americans fear the medical profession
and scientific research following the exposure of the
Tuskegee Syphilis Experiment.
21. • “Minority Americans' mistrust of science, fostered in
large part by the notorious Tuskegee study and
advanced by inequities in health care, continues
today, according to observers. While hard evidence is
lacking, many scientists believe that bad feelings
make it difficult for them to recruit minorities as
participants in biomedical research studies in such
areas as cancer and AIDS” - Reverby 2009.
22. • In 1974, the National Research Act was signed into
law, creating the National Commission for the
Protection of Human Subjects of Biomedical and
Behavioral Research.
23. • Regulations were passed in 1974 requiring
researchers to obtain voluntary informed consent from
all persons taking part in studies completed for or
funded by the Department of Health, Education, and
Welfare (DHEW).
24. • All DHEW-supported studies using human subjects
must be reviewed by Institutional Review Boards,
which read study protocols and decide whether the
study meets ethical standards.
• An Ethics Advisory Board was formed in the late
1970s to review ethical issues of biomedical research.
25. • In 1991, federal departments and agencies adopted
the Federal Policy for - The Protection of Human
Subjects.
• Efforts to promote the highest ethical standards in
research are still continuing today.
26. • President Bill Clinton apologized and recognized the
deliberate mistreatment of the Tuskegee men, as well
as the aftereffects created by the study.
27. • In October 1995, President Bill Clinton created
a National Bioethics Advisory Commission funded
and led by the Department of Health and Human
Services.
28. • The commission was succeeded by the President's
Council on Bioethics, which was established by
George W. Bush in 2001.
• President Barack Obama created the current Bioethics
commission by Executive Order in November 2009.
30. • The 40 year experiment was considered beneficial;
a reasonable and acceptable method for medical
research during the first 25-30 years of the study.
• The 1960’s coupled with the Civil Rights
Movement, exposed the atrocities and shock of
human rights.
31. • The experiment took place over FOUR decades
and was funded by our country.
• This experiment and basic disregard for human
rights occurred in the modern era and continued to
occur after we landed on the moon!
• The Tuskegee Syphilis Experiment remains the
longest non-therapeutic experiment on humans in
our country’s history.
32. • I was appalled by the lies and manipulation used by our
government on the citizens they are sworn to protect.
• When I learned this was still in process, continuing only 45
years ago (less than my mom’s age), I became angry.
• My anger turned to disgust after I discovered antibiotics
which could have saved lives were deliberately withheld.
• Learning it took another 25-30 years for our government
to acknowledge and apologize to the Tuskegee victims
was heartbreaking.
33. • Minorities continue to be wary of health professionals.
• Health care instituted Voluntary Informed Consent.
• Medical ethics and standards continue to evolve.
• The Protection of Human Subjects was put into place.
• The Bioethics Commission has continued to grow and
is funded by the Department of Health and Human
Services.
34. • I knew about the study, but I did not know it was funded by
the government and continued into the 1970’s.
• I also believed the experiment was being done to create a
to cure the men in the study.
• I did not know medical professionals had a cure and
deliberately steered the patients away from treatment.
• I learned the medical mantra, “First do no harm” was not
applied, and our country violated human rights.
• Finally, discovering African-American health care workers
collaborated and were also responsible was shocking.
35. The continued effects of the unethical experimentation on human beings
in Tuskegee, Alabama remain relevant. Spouses and children bare the
emotional scars of betrayal and loss, while many were forced to manage
the physical ramifications passed on from their Tuskegee loved ones.
Tuskegee left behind fear, fear within the African-American community
that genocide was plausible in our great nation, due to the atrocities
backed by our government and provided by American health care
professionals. Tuskegee is a shadow looming over our country’s
conscious, continuing to trigger distrust of science and medicine within
the minority community; albeit, strides have been made, and culpability
has been assigned. New laws, standards, practices, and regulations
are constantly being updated and put in place. Medical research,
breakthroughs, and innovative treatments are still needed and will
continue, as they should, but never again at the expense of even one
individual’s personal rights or personal freedoms.
36. Centers for Disease Control and Prevention. (2012). Research Implications.
Retrieved from http://www.cdc.gov/tuskegee/after.htm
Karigan, M. (2001). Ethics in clinical research: The nursing perspective. The
American Journal of Nursing, 101(9), 26-31
Kavanagh, D. & Konwiser, K. (Producers), & Sargent, J. (Director). (1997) Miss
Evers' Boys [Motion Picture]. United States: HBO.
Reverby, S. M. (2009). Examining Tuskegee: The Infamous Syphilis Study and
It’s Legacy. Chapel Hill, NC: University of North Carolina Press
The Tuskegee Study 1932-1972. Retrieved November 20, 2012, from
http://students.cis.uab.edu/tyelder/TangelaWebsite/historytimeline.html.
Unethical Human Experimentation in the United States. (n.d.) Retrieved
November 20, 2012, from
http://en.wikipedia.org/wiki/Human_experimentation_in_the_United_States
Zigman, L. (2012, October 25) Secret human testing: Victims in St. Louis
speak, demand answers. KSDK. Retrieved November 20, 2012, from
http://www.ksdk.com/news/local/story.aspx?storyid=344422T
