The Unethical History of Human Rights in Human Subjects Research (And Why We Need it So Badly Now)

April 23, 2025

Human subjects research has come a long way regarding working toward ethics and diversity in both those who conduct and participate in human subjects research. Now, scientific research is under attack. In this article, the author will reflect on the damning history of human rights breaches in human subjects research, while making a case for scientists to continue along their path of conducting more ethical research - specifically on disparities and marginalized communities - to move forward from this harmful past.

Notable Unethical Human Subjects Studies

Tuskegee Study

The Tuskegee syphilis study was conducted between 1932-1972, and researchers aimed to investigate the progression of syphilis in Black men. Researchers recruited Black men (some of whom had syphilis already, others to be put into a control group), but did not have them consent to the study. Participants were deceived into thinking that they were being treated for “bad blood.” These men were all withheld penicillin, which became an accepted treatment for syphilis less than halfway through the study. An Ad Hoc Advisory panel held after the study concluded a lack of informed consent and a breach of ethics in withholding treatment to participants and their families. Since this study concluded, there has been a class action lawsuit, and former President Bill Clinton has since issued a formal apology for this unethical study.

Henrietta Lacks

Henrietta Lacks was a Black woman diagnosed with cervical cancer in 1951. A sample of her cells, unlike other cancer cells which die outside the human body, were found to multiply outside of her body. These “HeLa” cells have been used to discover groundbreaking treatments since leaving her body, but she never knew of, let alone consented, to her cells or her name being used in this way. None of the profiteers that have profited from the groundbreaking discoveries made using her cells have handed a penny to her family. Some Black rights activists have advocated for her cells to stop being used for science until her family gets the credit and reparations they deserve. However, some of Lacks’ family members - aware of their use - encourage the continued use of her cells while acknowledging and celebrating their origins.

Milgram Experiment

The Milgram experiment, conducted in the early 1960s, aimed to investigate obedience to authority. However, participants were told that they were studying the impacts of punishment on learning. They were told to administer electric shocks to those who answered questions incorrectly, and increase the voltage every time the confederate (who participants believed was a respondent) got a question wrong. The confederate was not actually being shocked, but acted more distressed as the voltage increased and eventually stopped responding altogether. While participants expressed concern and distress over continuing to shock the confederate, they were forced to continue the study and deceived throughout their participation.

Money and Earhardt

David Reimer was born in 1965 as Bruce Reimer. Due to damaged genitals during an attempted circumcision, David received sex reassignment surgery and hormones, was renamed “Brenda”, and was raised and socialized as a girl. David’s pediatric psychologist, John Money, took this as an opportunity to provide evidence for his claim that gender is strictly socialized - using David’s brother as a control participant. David rejected femininity early on, de-transitioned as an adult, and ultimately committed suicide due to the trauma of being raised as a gender that he did not identify with. Dr. Money instructed the Reimer twins to engage in many unethical behaviors including simulated sex, and verbally abused them. While some use David’s experience as proof that gender is purely innate to invalidate trans people, Dr. Money used the study to advocate for unethical surgeries on intersex youth - something that many trans people and allies are against. Reimer’s experience also devastatingly mirrors that of many trans people.

Stanford Prison Experiment

The Stanford Prison experiment was conducted in 1971 and intended to measure whether certain traits are determined by “nature” or “nurture.” College men were recruited and told that they were participating in a study about prison life. Later that day, participants were “arrested” and taken to a “prison” with the other half of the participants who were assigned to be “guards.” The guard participants quickly started brutalizing and abusing the prisoner participants. All participants were strongly discouraged from withdrawing from the study. These ethics breaches along with a lack of credibility has raised into question whether this study should be retracted.

Improving Ethics

In 1979, after the aforementioned studies concluded, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research released the Belmont Report, which established guidelines for conducting ethical human subjects research. These guidelines include the three basic principles: respect for persons, beneficence, and justice. This means giving participants autonomy and treating them well and fairly. These principles have been applied to certain requirements for research, including: informed consent, assessment of risks and benefits, and applying ethics to participant selection by not being predatory toward marginalized or vulnerable populations. Overall ethical guidelines are now made accessible for many psychology students, having been translated into the following concepts: informed consent, protection from harm, right to withdraw, confidentiality and anonymity, and deception and debrief.

Notice how many of these principles and requirements were breached in the above research. David Reimer could not consent to participating in Dr. Money’s research, and it ended his life. Not only were the participants of the Tuskegee study harmed by being refused treatment, so were their communities as the disease unknowingly spread. The Stanford Prison Experiment participants were strongly discouraged from withdrawing. Henrietta Lacks’ name was very publicly linked to the research surrounding her cells without her consent. Finally, the Milgram experiment participants were deceived into thinking that they killed people. These principles, along with enhanced regulations within Institutional Review Boards who approve studies and the bodies that fund research, have protected vulnerable participants such as children, pregnant people, and marginalized communities for decades.

Why We Need Research So Badly Now

Since the birth of these necessary regulations, human subjects research has been more ethically conducted and researchers have made groundbreaking discoveries that have saved lives. National Institutes of Health (NIH) funding contributed to every single new drug approved by the Federal Drug Administration (FDA) between 2010 and 2016. Research significantly contributes to vaccines, which have eradicated deadly diseases such as measles and polio. However, not only is the research that has contributed to vaccines now under attack as outlined below, vaccines themselves have become a source of major controversy despite their public health effectiveness. Drugs and other treatments for physical and mental health, investigated by federal bodies such as the NIH, Centers for Disease Control (CDC), and National Science Foundation (NSF), have saved countless lives. Scientific research has a large return on investment (ROI) as it improves public health and creates jobs. Any drug or device that has safely saved a life, whether it be a pacemaker or chemotherapy, has years of science to thank.

Funding Cuts

Just two months ago, the second Trump administration took over the NIH and NSF, the largest funders of biomedical research. Since then, the NIH, NSF, and CDC have reduced the number of grants awarded and canceled a significant number of grants. These grant cancellations may be due to the intense efforts of the new Department of Government Efficiency (DOGE) to cut government spending wherever possible in order to pass a budget that significantly increases the deficit and cuts taxes for billionaires.

These cancellations also may be due to an attempt to censor any grants involving Diversity, Equity, and Inclusion (DEI) - a widespread effort which has been blatantly attacked by the new administration. DEI grants are being cancelled with little explanation to the former grant recipients besides that the grant funding doesn’t meet the priority of the government. Some cancellation letters even go so far as to say DEI research contributes nothing to science, and that DEI research paradoxically contributes to discrimination - despite its intentions being anti-discriminatory. Many reports are circulating stating that words which indicate DEI research are being flagged so that this research no longer receives funding. Prior to this, very few grants were cancelled by the NIH - and most of these grants were cancelled to protect participant ethics as outlined above.

The Trump administration also attempted to cap NIH indirect/“non-essential” funding to 15%. Researchers already work off-the-clock and with few resources; the entire NIH budget was only 2.7% of the entire Health and Human Services budget, and equated to 1/18th of the defense budget. These “non-essential costs” often cover things other offices would consider essential; technology and valuable administrative support being two examples. DOGE has been justifying these budget cuts by reporting these grant numbers on their website - but have been severely inflating and misreporting these funding numbers. President Trump recently mentioned funding given to research on “transgender mice.” These grant cancellation justifications stem from falsehoods and misreporting, but will have devastating impacts.

What Can We Do?

While the author was doing research for this article using the CDC website on the Tuskegee study, their heart broke when they realized that they could no longer trust that this site was a reputable source due to the recent erasure of diversity and equity related content from government sites. Nonetheless, they trust this information isn’t gone forever - nor is the future of science. Through trial and error, we can figure out how to get the grant funding that we need and create the illusion of compliance while continuing to do ethical health disparities research we’ve been working towards for decades.

We can report our lost grants and organize to save them. We can continue to contact our representatives to remind them of the importance of our work. We can weave advocacy into our talks; at conferences, to the press, and on our social media accounts. In order to do this, we must ensure our work and advocacy is accessible to the broader public. That is part of the work we do here at the Human Rights Research Center. Just as we are beginning to atone for the injustices of our past and ethically include marginalized communities in our research, we cannot let all that we have done go awash by complying in advance.

Glossary

Abusing - To bombard someone with words or physical harm.
Ad Hoc Advisory Panel - A temporary group created to revise regulations.
Advocacy - To express the use or good of a certain thing.
Anonymity - Keeping someone’s identity under wraps.
Atone - To make amends and repair.
Awash - To go away, to not exist anymore.
Breach - To violate, to go against the rules to do something.
Broader Public - In this context, people outside of the science field.
Brutalize - To attack someone violently.
Circumcision - A procedure in which the foreskin of a penis is removed for religious or hygienic purposes.
Class action lawsuit - A group that has suffered collectively sue.
Compliance/complying - The assurance someone is following rules and regulations.
Conduct - How a person behaves.
Confederate - An actor in a psychological study.
Control group - A group of participants in a study who either don’t receive a treatment, or for whom the independent variable is not manipulated.
Controversy - Some people thinking something is good or useful, others thinking it’s bad.
Credibility - Something being trusted.
Debrief - In research, disclosing the true purpose of a study after it is completed.
Deception - In research, someone participating in a study without knowing what it is truly for.
De-transitioned - When someone who socially or medically transitions to a gender other than the one they were assigned at birth, then transitions back to the gender they were assigned at birth.
Disparities - Difference in level of treatment, due to systemic injustices.
Diversity, Equity, and Inclusion (DEI) - a movement to ensure historically marginalized or underserved groups are included in workplaces, education, etc.
Enhanced regulations - Making rules stricter to enforce something.
Eradicated - In the case of a disease, people are no longer contracting it.
Ethics - morals and philosophy as a field of study or something to enforce.
Falsehoods - Things that are not true.
Grieve - To mourn the loss of something.
Groundbreaking - Significant, game-changing
Human subjects research - Studies with human participants.
Illusions - Making something seem a certain way that it is not.
Informed consent - In the case of research, knowing what a study’s participation will truly involve before participating.
Innate - True to oneself regardless of environmental factors.
Invalidate - To make something seem untrue or unimportant.
Intersex - People who have characteristics of more than one sex.
Marginalized - Systemically treated unjustly through being denied rights and resources.
Misreporting - Reporting something that is not true as if it is true.
Nature - Due to genetics.
Nurture - Due to the environment.
Participate - Enroll in a research study.
Profiteers - People who profit (make money from) something.
Penicillin - An antibiotic/antibacterial drug.
Retract - To take something back after it’s been put out.
Return on Investment (ROI) - Measures the cost of investment compared to the revenue it generates.
Sex reassignment surgery - A procedure that changes one's sex assigned at birth.
Simulated - Fake, but made to seem real.
Socialized - How someone is raised socially.
Syphilis - A bacterial sexually transmitted infection causing sores, lesions, flu like symptoms, and eventually potential death.
Voltage - Pressure from an electrical circuit.
Withdraw - To remove yourself or opt out from a study and no longer participate.

Sources

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The Unethical History of Human Rights in Human Subjects Research (And Why We Need it So Badly Now)

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