ByNick Henke

Tuskegee Syphilis Experiment

40 Years of “BAD BLOOD”

Tuskegee Syphilis Study - Thesis

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.

What do you know about the

Tuskegee Syphilis Experiment?

Facts about Tuskegee Syphilis

Experiment• 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.

Facts about Tuskegee Syphilis

Experiment - Purpose

• 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)

Facts about Tuskegee Syphilis

Experiment - Purpose

• “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

Facts about Tuskegee Syphilis

Experiment - Participants

• 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.

Facts about Tuskegee Syphilis

Experiment - Participants

– Participants believed they were receiving treatment for their “bad blood”.

Facts about Tuskegee Syphilis

Experiment - Treatment

• 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.

Facts about Tuskegee Syphilis

Experiment - Treatment

• Viewing the long-term effects of syphilis remained the primary objective, resulting in the suffering, spreading, and the ultimate death from non-treatment.

Facts about Tuskegee Syphilis

Experiment - Results• 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.

Tuskegee Syphilis Experiment – Practitioners• 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)

Tuskegee Syphilis Experiment – Practitioners• 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.

Tuskegee Syphilis Experiment – Nurse

Eunice Rivers• 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.

Tuskegee – On the Small Screen

“Miss Evers’ Boys1997 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 BernsteinProduced by: Derek Kavanagh & Kip KonwiserStarring: Alfre Woodard

Tuskegee Syphilis Experiment - Ethical Issues

• 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.

Tuskegee Syphilis Experiment - Ethical Issues

• 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.

Tuskegee Syphilis Experiment – Ramifications

• Many African-Americans fear the medical profession and scientific research following the exposure of the Tuskegee Syphilis Experiment.

Tuskegee Syphilis Experiment – Ramifications

• “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.

Tuskegee Syphilis Experiment –Regulation and Legislation

• 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.

Tuskegee Syphilis Experiment –Regulation and Legislation

• 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).

Tuskegee Syphilis Experiment –Regulation and Legislation

• 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.

Tuskegee Syphilis Experiment –Regulation and Legislation

• 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.

Tuskegee Syphilis Experiment –Regulation and Legislation

• President Bill Clinton apologized and recognized the deliberate mistreatment of the Tuskegee men, as well as the aftereffects created by the study.

Tuskegee Syphilis Experiment –Regulation and Legislation

• In October 1995, President Bill Clinton created a National Bioethics Advisory Commission funded and led by the Department of Health and Human Services.

Tuskegee Syphilis Experiment –Regulation and Legislation

• 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.

“An understanding of the complex rules, regulations, and issues

governing trials and research, such as the meaning and importance of

informed consent, research protocol, and how an institutional review board (IRB) functions, is absolutely essential to providing nursing care in a clinical trial.”

-Maria Karigan, MSN, RN, CCRC

Tuskegee Syphilis Experiment – The Time

• 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.

Tuskegee Syphilis Experiment – Unique

History• 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.

Tuskegee Syphilis Experiment – My Take

• 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.

Tuskegee Syphilis Experiment – Changes

• 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.

Tuskegee Syphilis Experiment – I learned

• 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.

Tuskegee Syphilis Experiment – In

ConclusionThe 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.

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

References