14.1. Tuskegee Syphilis Study, 1932-1972

The study began in 1932 with the recruitment of around 600 men, of whom around 400 had syphillis. This disease is sexually transmitted, and can have devastating consequences for those affected. The study was run by the US Public Health Service and participants were informed of this fact.

Several other features of the experiments are worth noting:

• it was non-therapeutic. This means that there was attempt to treat the men; the object was, instead, to observe the effects of the disease in the subjects.

• the men, who were primarily poor and Black, were told they would receive (free) health care. In practice though, they were offered false and ineffective treatments.

• the men were also initially told that the length of the study would be 6 months. In practice, it lasted for some 40 years.

• at the beginning of the study, there were no effective treatments available for syphilis. But this changed with the advent of antibiotics. Yet the men were actively prevented from obtaining that treatment by, for example, preventing them being drafted to the military where they would have received appropriate medical care.

By the late 1960s, given its deep moral failings, pressure built to end the study. But these attempts were rebuffed by the Public Health Service itself. Members of the relevant panel convened to discuss the experiment. They recognized that the study was unusually ethically dubious, but argued that this made it rare and thus worth continuing. In addition, while panelists agreed that informed consent was important for medical research, they claimed that the relevant subjects in this experiment were too uneducated to give it.

Ultimately, the press discovered the details of the experiment and it ceased in the early 1970s. President Clinton publicly apologized for the treatment of the subjects in 1997 saying

What was done cannot be undone, but we can end the silence. We can stop turning our heads away. We can look at you in the eye, and finally say, on behalf of the American people, what the United States government did was shameful and I am sorry.

Consequences of Tuskegee

Of course, the Tuskegee experiment affected its subjects negatively. But it also affected the subjects’ families, who were exposed to the disease. In the longer term, it decreased trust in the medical community, especially from Black citizens. Experience with the experiment affected subsequent public health efforts to, for example, treat HIV/AIDs in the 1980s, and Covid-19 in more recent times.

The ethical failings also lead to bureaucratic and legal responses: specifically, the Belmont Report (1974) and Menlo Report (2012) that provide the basic framework for university human subject research today.

Belmont Report (1974)

The Belmont Report was a response to the Tuskegee Study, and with the Menlo Report…

1. it defined principles for research, as opposed to practice. In the Belmont Report, research is concerned with creating generalizable knowledge as opposed to everyday treatments.

2. it laid out three ethical principles that must be considered when doing research. These are Respect for Persons, Beneficence and Justice. The Menlo Report added Respect for law and public interest.

3. provided the framework and guidance for all academic research in the US in terms of an Institutional Review Board (IRB) that is charged with reviewing research proposals in terms of the potential ethical considerations.

Challenges of the Modern Data Science Era

As we have argued elsewhere in this course, data science is a fast moving area. This poses problems in the ethical domain. In particular, it is often unclear how our ethical principles should be applied. This all the more difficult as we scale up our ability to gather data on humans, often without them knowing. It is not simply that this causes problems for privacy and informed consent, it also that we run the risk of unanticipated secondary use. That is, researchers can take (huge) human subject datasets and in way not expected by the original researchers, use them for malign purposes. We will return to such issues below. First though, we lay out the principles of research ethics.