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The Past and Future Lives of Scientists

By Octavia Cade

The Past and Future Lives of Test Subjects is a disgusting story. I don’t blame you if you don’t like it.

I don’t like it either.

Every person in it is vile. They have no redeeming value whatsoever, unless it’s as a warning to scientists of what they should never let themselves become.

The story is based on the Tuskegee Syphilis Experiment, conducted by the United States Public Health Service in the mid-twentieth century. Its intended victims were Black men, who were told they were receiving free health care; in reality the scientists of the Public Health Service wanted to observe the unchecked  progression of syphilis and no treatment was ever given. You’ll note I say the “intended” victims. Syphilis is, of course, transmittable, and it was transmitted both to the wives of these men and to the children born from these partnerships.

Syphilis, whether congenital or from sexual contagion, is an ugly disease. The women and children were collateral damage. They must also, to the scientists involved, have been an opportunity, a happy windfall of extra test material, to expand progression into reproduction.

Untreated syphilis is not just contagious. It can also be fatal. Some of the men died, deliberately starved of medical care. Let me be clear: Tuskegee was the state-sanctioned, science-sanctioned murder of Black men. Every scientist involved knew the risks of untreated syphilis, and deliberately chose to let those risks fall on others. On people who, let’s be honest here, were not like themselves.

I’m not a person of color. The stories of the Tuskegee victims are not my stories. I am a scientist, a biologist by training, with a PhD in science communication. I don’t know that that’s enough for me to write those stories. The duty to communicate the history of ethical failings in science is one thing, but the appropriation of the victim’s stories is quite another. The sheer, terrible rage I feel at experiments like Tuskegee is undoubtedly limited when compared to the rage of those more closely affected than I am. If you’re looking for relevant material by Black writers, I would direct you to The Tuskegee Syphilis Study: An Insiders’ Account of the Shocking Medical Experiment Conducted by Government Doctors Against African American Men by Fred D. Gray, and the forthcoming Tuskegee’s Forgotten Women: The Untold Side of the U.S. Public Health Services Syphilis Study by Deleso A. Alford. Wider studies that intersect health and race and provide a context for the scientific culture that approved the Tuskegee experiment include Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington; Medical Bondage: Race, Gender, and the Origins of American Gynecology by Deirdre Cooper Owens; and finally, Killing the Black Body: Race, Reproduction and the Meaning of Liberty by Dorothy Roberts, which is outstanding in every respect.

The Past and Future Lives of Test Subjects isn’t about the victims of that hideous experiment. It’s about the perpetrators. Those scientists certainly would never have performed that experiment on someone like me—a white, educated woman, from what they would consider to be a decent middle-class family. No doubt women like me were meant to be the beneficiaries of such research, and not the subjects of it. If I’m supposed to be grateful, I’m not.

As I said, I’m a scientist myself. I expect them to know better. Their behavior is an indictment of the rest of us. That is a statement that flirts with self-aggrandizement; I am not the center of this story. It is, nonetheless, true. Scientists have a responsibility to hold their colleagues to account—to insist on ethical practice and responsibility. In that regard, as in so many others, the Tuskegee experiment was a monumental failure.

The consequences of that failure have been profound. They are generational, and in more than one way. This experiment ran for forty years. That is not a typo. It began in 1932, and whistle-blowing by the epidemiologist Peter Buxtun ended it in 1972. He’d been protesting about the experiment to the Public Health Service since 1966, and those protests had gone nowhere—the experiment wasn’t concluded, he was told, as if that were reason enough to keep it going. Only by giving up on the scientists and going to the press in 1972, was Buxtun able to see the Tuskegee experiment ended.

Forty years. Think about that. Think about all the scientists who conducted these experiments over the four decades that they spanned. Yes, there were other people involved. Non-scientists. I’m not currently concerned with them. Forty years is two generations of corrupt scientists. Two generations of scientists ignoring their ethical obligations. Two generations of scientists covering for each other so that no one would find out about their breaches. Two generations of scientists setting the professional standards of science for themselves and for others.

Two generations of scientists, supplementing their work, or subsequently to it, sharing the standards behind that work by teaching the next generation of scientists, and the next.

Just how far has the rot spread?

If the allegations made about forced hysterectomies of migrants in ICE facilities turn out to be correct, the ethical genealogy of any health worker involved traces back through those two generations of corruption, and further beyond.[1] As Medical Apartheid, Medical Bondage, and Killing the Black Body make clear, Tuskegee was not an isolated failure of ethics; rather it was one that derived from a culture of significant moral failings and medical malpractice regarding race. Tuskegee is perhaps the most famous example of that history, but even today more examples are being added.

The spread of COVID-19 through American prisons, for example, is being closely monitored by both the non-profit organization The Marshall Project and the UCLA Law COVID-19 Behind Bars Data Project. Recently published studies indicate a much higher rate of infection and death inside prisons than in the general population.[2] Prisons, admittedly, are places of high population density, which makes it easier for contagion to spread. However, inequalities within the justice system have seen disproportionate numbers of people of color jailed, with Black men being the worst affected. Bureau of Justice statistics for 2018 show 2,272 per hundred thousand Black men jailed, as opposed to 392 per hundred thousand white men.[3] It is frankly foolish to believe that the systemic racism behind this result has not also contributed to the poor health outcomes experienced by prisoners during this pandemic,[4] let alone at any other time. It is also deeply unsurprising to learn that COVID-19 testing refusal rates in prisons can be high, with one study, published by the Center for Disease Control, reporting them at over 17%.[5] Although that study does not break down refusal rates by ethnicity, the high proportion of incarcerated people of color, combined with a history of medical exploitation of those people by the state, has certainly contributed to the total breakdown in trust that this refusal implies.

Those two generations of scientific corruption are a direct cause of this distrust.[6] They are not the only cause, but they are a significant one. Distrust is a rational result. In the same circumstances, I too would be distrustful.

I wrote The Past and Future Lives of Test Subjects before the onset of the COVID-19 pandemic. It is in no way a deliberate reflection on it. That the future scientist of the story was experimenting on prisoners is coincidental, but it is coincidental in timing, not in consequence. As a population, prisoners are vulnerable to exploitation. They are isolated. They are unpopular. They lack power. This makes them easy targets. In this, they are similar to many minority groups, and it’s no coincidence that when unethical experiments such as Tuskegee are performed, the test subjects of those experiments are frequently markedly different from the scientists performing them. The Tuskegee study targeted Black men. The Guatemala syphilis experiments, conducted from 1946–1948 by the United States Public Health Service (the same organization behind Tuskegee, remember, with some crossover of staff) likewise targeted people of color, and particularly disenfranchised people, such as prostitutes, prisoners, and the mentally ill. Even earlier, the 1867 study, which took place in London Lock Hospital and attempted to inoculate syphilitic patients with further doses of syphilis, was performed primarily on women. Some of the test subjects in this last case received over four hundred disfiguring, painful inoculations with syphilitic material. They were also prevented from receiving mercury, which was believed at the time to aid in treating the disease. And as Anne Hanley points out in her discussion of the London experiments, while lip service was given to the ideals of informed consent, all the test subjects were poor and uneducated, vulnerable not only to subtler means of coercion, but perhaps incapable of real informed consent in the first place.[7]

This, please note, is a handful of studies in the history of a single disease. It is not exhaustive, and the history of unethical experimentation in science is greater by far then these few examples. Tuskegee, however, is potentially the most famous. It is certainly among the most long-lasting.

I say again: forty years. Two generations of corrupt scientists passing that corruption on. I repeat this point because it’s relevant to The Past and Future Lives of Test Subjects. The American Surgeon General from 1936–1948, and therefore the man who held ultimate responsibility for both the Tuskegee and Guatemalan experiments, was Thomas Parran Jr., and after leaving the Public Health Service, he ended up as dean for public health at the University of Pittsburgh. John Charles Cutler, a surgeon involved in both the Guatemalan and Tuskegee experiments, held the position of assistant Surgeon General, and went on to become both a professor and then the acting dean of international and then public health, also at the University of Pittsburgh.

It is safe to say they took their ethics with them—such ethics as they had, anyway, which obviously weren’t up to much. These, too, are limited examples, but four decades of scientists working on Tuskegee is a lot of scientists moving, one day, into alternate employment, into teaching and researching and molding the generations of scientists to come. That leaves a mark.

Ethical genealogy, we’ll call it.

The Past and Future Lives of Test Subjects is ethical genealogy writ speculative. It’s the future we get if scientists don’t up their fucking game. There are two story lines in it, reflecting and repeating each other, and the two central scientists have one salient thing in common: little has been learned, and they get away with it.

The Tuskegee scientists got away with it. Don’t tell me they didn’t. Don’t tell me their use as object example is proof otherwise. They got away with it. Don’t tell me the victims of their hideous experiments got an apology from the United States government—in 1997, twenty-five years after the experiment ended, sixty-five years after it began. Those scientists got away with it. Don’t tell me about the overhauling of bioethics since Tuskegee. That’s great, but they knew better, and they got away with it. Don’t tell me about the damage to the characters of the scientists involved (often posthumously), many of whom had undeservedly excellent reputations in their lifetime. They got away with it. They weren’t jailed for murder. They weren’t jailed for child abuse. They weren’t jailed for torture. They got away with it.

And what’s really, really awful is that they’re not the only ones. It’s tempting to look at something like Tuskegee—or it can be, for those who don’t identify with its victims—as something terrible, but ultimately historical. As if its tendrils don’t reach down through the practice of science into migrant camps and prisons and all the other places where it’s a little bit easier to keep experiments a little more hidden, out of sight and oversight both. It’s tempting to say that things are different now, and doctors have ethics as part of their training, as if things are different enough, and as if doctors are the only ones requiring ethical training and the rest of the scientific world is somehow immune from the moral repercussions of their own work.

I said I was a biologist. My background’s in botany and marine science. No one ever made me take an ethics class. I don’t see the geologists required to either, or the physicists, or any of the rest. No one comes to talk to us about, for instance, environmental racism—the way that climate change is more likely to affect the poor and the brown, and the way that our choices as scientists impact this. Big Oil has downplayed the effects of climate change just as effectively as Big Tobacco used to downplay the effects of smoking and nicotine. Where’s the ethical training for geology students? Nowhere, that’s where. We train them up in science and send them off to oil companies to participate in a global experiment where their vocation contributes to the death of entire species, let alone the misery and degradation—and yes, the deaths too—of their fellow human beings. That’s not the aim of their research, of course, any more than infants with congenital syphilis was the aim of the Tuskegee scientists, but it’s the inevitable consequence. We know this, and we do nothing. We let them get away with it. We let ourselves get away with it.

I have sympathy for the geologist whose main chance of employment lies with an oil company, but if a doctor’s main chance for employment lay with something like Tuskegee, would we, as fellow scientists, tell them to take it? Or would we say no? No, we have standards. No, this isn’t what science is for. No, we need to do better. As scientists, we need to stop pretending that we have the luxury of being disengaged from the applications of our work. We can’t plot missile trajectories and disclaim responsibility for weapons use. (Where do we think those missiles are being sent? Not into our neighborhoods, that’s for sure.)

Science is a study of cause and effect, of consequence. So is science fiction. It’s the genre of ideas, more than anything. What happens when a new piece of knowledge or a new piece of technology works its way through a society? The Past and Future Lives of Test Subjects shows a world where not much changes.

Imagine the science fiction we could have had if Tuskegee had been shut down before it even began, or if the culture that birthed it hadn’t had the dreadful histories of experimentation that Washington, Owens, and Roberts relate. I wonder what our science fiction would look like then. How much more hopeful it would be? How much would a history of ethical science change the narrative for both science and science fiction? What would biopunk and genetic engineering look like in fiction if there’d been a solid background of informed consent shot through the entire history of medicine? What would climate fiction look like if every scientist who suspected environmental destruction in their work held themselves personally accountable for that destruction? What would military science fiction look like if the only weapons researchers that authors had to base their characters on were required to operate the instruments of death that they themselves devised?

We don’t have that. Instead, we have nasty little stories like The Past and Future Lives of Test Subjects, because as scientists, that’s what we have settled for. Superficial improvements in strictly limited areas of research, and not a lot of real change underneath. Science fiction as warning instead of hope, because as scientists, we lost our way and never really made it back.

You want to know why I think this? Ask me how easy it was to write this
story. I’ll tell you it was one of the easiest stories I’ve ever written. I’m not talking about the structure, which took some work, or the prose, which needed the usual polishing. I’m talking about the justifications. They slid out easy as breathing. I’m certain that those disgraceful excuses for doctors involved in Tuskegee used exactly these justifications, simply because they are so easy. The needs of the many outweigh the needs of the few, or the one, and if as a science fiction fan that excuse doesn’t make you wince in this context, then you have fundamentally
misunderstood your own potential for culpability, and for complicity.

There is a concerted effort, at the moment, to get more minorities into STEM. It’s a valuable effort, and more eyes make it more difficult for unethical scientific practices to flourish. But the heavy lifting—in science, as in science fiction—cannot be left to these groups. They’ve done enough of the heavy lifting just getting themselves into STEM fields in the first place, what with all the barriers put in place to keep them out. It’s up to the rest of us—to the scientists who look like me—to address the systemic problems in our field. Because those revolting scientists in this revolting story?

They’re us. And we’re not good enough.

[1]  A complaint laid by the Project South Institute for the Elimination of Poverty and Genocide about non-consensual gynecological procedures performed in ICE facilities, and subsequent Freedom of Information Act requests for further information by both Project South and the National Immigration Project can be found here: https://projectsouth.org/groups-file-foia-request-to-demand-transparency-
and-accountability-for-medical-abuse-of-people-at-ice-detention-facilities/

[2]  In a letter to the medical journal JAMA, for instance, Brendan Saloner, Kalind Parish, and Julie A. Ward described infection rates for prisoners that were 5.5 times higher than that of the general public, and death rates that were 3.0 times higher (adjusted for age and sex distribution). “COVID-19 Cases and Deaths in Federal and State Prisons.” JAMA, 2020;324(6):602–603. DOI:10.1001/jama.2020.12528.           

[3]  Bureau of Justice Statistics, Prisoners in 2018, Table 10, as reproduced by the non-profit Prison Policy Initiative: https://www.prisonpolicy.org/blog/2020/07/27/disparities/

[4]  Sophie Kasakove, “‘It’s Horrible’: How the US Deep South’s Prisons Exacerbate the Pandemic.”
The Guardian, 17 April 2020. https://www.theguardian.com/us-news/2020/apr/17/us-prisons-coronavirus-
deep-south

[5]  L. M. Hagan, S.P. Williams, A.C. Spaulding, et al. “Mass Testing for SARS-CoV-2 in 16 Prisons and Jails — Six Jurisdictions, United States, April–May 2020.” Morbidity and Mortality Weekly Report, 2020;69:1139–1143. DOI: http://dx.doi.org/10.15585/mmwr.mm6933a3  &nbsp;

[6]  A useful paper here is Vicki S. Freimuth et al. “African Americans’ Views on Research and the Tuskegee Syphilis Study.” Social Science & Medicine, 2001; 52(5): 797-808.         

[7]  Anne Hanley. “Syphilization and Its Discontents: Experimental Inoculation against Syphilis at the London Lock Hospital.” Bulletin of the History of Medicine, 2017; 91( 1): 1-32.

© 2020, Octavia Cade


ABOUT THE AUTHOR

Octavia Cade has a PhD in science communication, and a background in biology. She likes to use her expertise in these areas of study to explore how science is presented in speculative fiction. Her academic papers of this sort include “Sifting Science: Stratification and The Exorcist” published in Horror Studies and “Microbiology and Microcosms: Ecosystem and the Body in Shriek: An Afterword” published in Surreal Entanglements: Essays on Jeff VanderMeer’s Fiction (forthcoming, Routledge). Relevant conference presentations include “From Peasant Mob to Supported Laboratories: The Scientist in Horror” at New Research on Horror; “Eco-Horror, Mutation, and the World Without Us” at Superheroes Beyond; and “Living and Reading the Apocalypse: Ecological Disaster and Science Fiction” at CoNZealand.

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