Bioethics Forum Essay
Suing for Justice? More on the U.S. STD Studies in Guatemala
On April 1, a $1 billion lawsuit was filed by three law firms based in the United States and Venezuela against Johns Hopkins University, the Rockefeller Foundation, and Bristol-Myers Squibb on behalf of more than 750 Guatemalans alleged to have been harmed when the U.S. Public Health Service and the Guatemalan government supported an immoral STD inoculation study in the 1940s. A previous lawsuit against the U.S. government was dismissed on technical legal grounds in 2012. Having found the study’s records in the archives at the University of Pittsburgh, I wrote about it and shared my findings with the Centers for Disease Control and Prevention. The result was an apology from the Secretaries of State and the Department of Health and Human Services on October 1, 2010, a call from President Obama to then President Colom of Guatemala, worldwide media attention, and a 200-page report by the Presidential Commission for the Study of Bioethical Issues, as well as a report by a parallel commission in Guatemala. I have not been involved in this lawsuit, although one of the lawyers called me about the names of the people involved months ago.
This new lawsuit raises the serious and still unresolved question of how to obtain justice for those harmed by the study. The difficulties are enormous. The names in the records are vague. The study took place nearly 70 years ago. The U.S. Public Health Service ran it with funds from the National Institutes of Health and the Health Ministry in Guatemala. So who should pay for the harm to the victims and their families? Is payment a form of justice?
John Cutler and Juan Funes, who directed the studies for their respective governments in the U.S. and Guatemala, were employees of their governments. The study did get approval from the Syphilis Study Section of the National Institute of Health, run by Johns Hopkins professor Joseph Earle Moore. Thomas Parran, the U.S. Surgeon General who approved the study, also sat on the board of trustees at the Rockefeller Foundation. Fred Soper, on leave from the Rockefeller Foundation, was running the Pan American Sanitary Bureau that also supported the study. Presumably some former Bristol-Myers Squibb entity provided the penicillin that was supposed to be used for treatment. Are these institutions responsible?
Consider this. I have sat, as I am sure many others have, on study sections for the National Institutes of Health or National Science Foundation. What if some study I approved along with others turns out to go horribly wrong, and harms its subjects. Should Wellesley College, where I teach, be sued for my actions when I was acting on behalf of the government? If I am on the board of a nonprofit, should it be sued when a student protests the grade I gave him or her while teaching at Wellesley? I know the arguments about suing gun manufacturers and drug companies who ought to know how their products will be used. But should the drug company being sued here have known what the Public Health Service was doing, or, more to the point, not doing with their penicillin in Guatemala?
If the suit prevails in any way, what would you do as a university or college president? Would you tell your faculty to never serve on a government study section? What would happen to peer review of research proposals funded by the government?
There are many reasons to assume that Johns Hopkins, the Rockefeller Foundation, and Bristol-Myers Squibb have blood on their hands for wrongdoing both in the distant and near past. But is this one of them? The very claims in one of the law firm’s statements are also vague: “Most were never treated [true from what we can tell], and thereby passed the venereal disease onto their spouses and children.” However, we cannot tell from the records how many of those inoculated actually became infected. The U.S. bioethical issues commission concluded that “the commission did not attempt to identify how many people were clinically infected or how many people received adequate treatment.” We have a sense of how many were “exposed,” but not how many were “infected.” Of course the forms of exposure were egregious, the lack of permission awful, and the entire project suspect.
I feel very troubled, however, by this lawsuit development. Obviously I think some kind of restorative justice ought to be provided to the Guatemalan victims of the outrageous study. So what counts as justice? And who really are the victims? Alas our system is set up to see justice in a courtroom with some payment for “pain and suffering.” I, and others, have argued that it was the institutional arrogance of the scientific research paradigm, the lack of regulatory framework, and imperial logic, racism, classism, and sexism that made the study possible. Until the revolution, as it were, we need a way to provide justice in part by acknowledging what happened and perhaps building up the scientific infrastructure in Guatemala. Who should pay for that?
Susan M. Reverby is the McLean Professor in the History of Ideas and Professor of Women’s and Gender Studies at Wellesley College.
Posted by Susan Gilbert at 04/03/2015 03:37:23 PM |