This article was published in Scientific American’s former blog network and reflects the views of the author, not necessarily those of Scientific American
Teaching about the history of scientific research with human subjects bums me out.
Indeed, I get fairly regular indications from students in my "Ethics in Science" course that reading about and discussing the Nazi medical experiments and the U.S. Public Health Service's Tuskegee syphilis experiment leaves them feeling grumpy, too.
Their grumpiness varies a bit depending on how they see themselves in relation to the researchers whose ethical transgressions are being inspected. Some of the science majors who identify strongly with the research community seem to get a little defensive, pressing me to see if these two big awful examples of human subject research aren't clear anomalies, the work of obvious monsters. (This is one reason I generally point out that, when it comes to historical examples of ethically problematic research with human subjects, the bench is deep: the U.S. government's syphilis experiments in Guatemala, the MIT Radioactivity Center's studies on kids with mental disabilities in a residential school, the harms done to Henrietta Lacks and to the family members that survived her by scientists working with HeLa cells, the National Cancer Institute and Gates Foundation funded studies of cervical cancer screening in India -- to name just a few.) Some of the non-science majors in the class seem to look at their classmates who are science majors with a bit of suspicion.
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Although I've been covering this material with my students since Spring of 2003, it was only a few years ago that I noticed that there was a strong correlation between my really bad mood and the point in the semester when we were covering the history of human subjects research. Indeed, I've come to realize that this is no mere correlation but a causal connection.
The harm that researchers have done to human subjects in order to build scientific knowledge in many of these historically notable cases makes me deeply unhappy. These cases involve scientists losing their ethical bearings and then defending indefensible actions as having been all in the service of science. It leaves me grumpy about the scientific community of which these researchers were a part (rather than being obviously marked as monsters or rogues). It leaves me grumpy about humanity.
In other contexts, my grumpiness might be no big deal to anyone but me. But in the context of my "Ethics in Science" course, I need to keep pessimism on a short leash. It's kind of pointless to talk about what we ought to do if you're feeling like people are going to be as evil as they can get away with being.
It's important to talk about the Nazi doctors and the Tuskegee syphilis experiment so my students can see where formal statements about ethical constraints on human subject research (in particular, the Nuremberg Code and the Belmont Report) come from, what actual (rather than imagined) harms they are reactions to. To the extent that official rules and regulations are driven by very bad situations that the scientific community or the larger human community want to avoid repeating, history matters.
History also matters if scientists want to understand the attitudes of publics towards scientists in general and towards scientists conducting research with human subjects in particular. Newly-minted researchers who would never even dream of crossing the ethical lines the Nazi doctors or the Tuskegee syphilis researchers crossed may feel it deeply unfair that potential human subjects don't default to trusting them. But that's not how trust works. Ignoring the history of human subjects research means ignoring very real harms and violations of trust that have not faded from the collective memories of the populations that were harmed. Insisting that it's not fair doesn't magically earn scientists trust.
Grappling with that history, though, might help scientists repair trust and ensure that the research they conduct is actually worthy of trust.
It's history that lets us start noticing patterns in the instances where human subjects research took a turn for the unethical. Frequently we see researchers working with human subjects who that don't see as fully human, or whose humanity seems less important than the piece of knowledge the researchers have decided to build. Or we see researchers who believe they are approaching questions "from the standpoint of pure science," overestimating their own objectivity and good judgment.
This kind of behavior does not endear scientists to publics. Nor does it help researchers develop appropriate epistemic humility, a recognition that their objectivity is not an individual trait but rather a collective achievement of scientists engaging seriously with each other as they engage with the world they are trying to know. Nor does it help them build empathy.
I teach about the history of human subjects research because it is important to understand where the distrust between scientists and publics has come from. I teach about this history because it is crucial to understanding where current rules and regulations come from.
I teach about this history because I fully believe that scientists can -- and must -- do better.
And, because the ethical failings of past human subject research were hardly ever the fault of monsters, we ought to grapple with this history so we can identify the places where individual human weakness, biases, blind-spots are likely to lead to ethical problems down the road. We need to build systems and social mechanisms to be accountable to human subjects (and to publics), to prioritize their interests, never to lose sight of their humanity.
We can -- and must -- do better. But this requires that we seriously examine the ways that scientists have fallen short -- even the ways that they have done evil. We owe it to future human subjects of research to learn from the ways scientists have failed past human subjects, to apply these lessons, to build something better.