From the New York Times, July 4, 2012:
IN the late 1940s, researchers from the United States Public Health Service, in cooperation with the Guatemalan government, carried out experiments on Guatemalan prisoners, soldiers, sex workers and patients in a mental institution, exposing them to sexually transmitted diseases without their consent, in order to develop new methods of prevention. Research involving intentional exposure to infectious pathogens had been done before, and still occurs today, but with ethical safeguards that were not in place in Guatemala. What happened there was wrong because of the lack of individual consent, the subjects’ vulnerability and the degrading nature of some research methods; in addition, the science was shoddy and the record-keeping so poor that it is hard to know how many Guatemalans were exposed to infection, successfully infected or adequately treated, let alone precisely who the subjects were.
Nonetheless, Guatemalans claiming to be research victims and their heirs brought a class-action suit in federal court last year seeking compensation, after unsuccessfully urging the government to set up a claims process like that of the September 11th Victim Compensation Fund. On June 13, the United States District Court for the District of Columbia rejected their claims on jurisdictional and technical grounds.
But the United States still needs to rectify the injustice it inflicted on these people. Congress and the Obama administration should now enact a voluntary program to help them.
The research wasn’t revealed to the public until 2010, after a historian discovered the records. President Obama quickly issued an apology to those affected and ordered an investigation by his Presidential Commission for the Study of Bioethical Issues. Last year, the commission concluded that the studies “involved gross violations of ethics,” even under the standards of the time.
Against this background, the court’s decision may appear frustrating and unfair; in fact, appeals are likely. But litigation never really seemed to be the best way to address the obvious wrongs. Indeed, the judge’s opinion dismissing the case acknowledged that although the Guatemala studies were deeply troubling, only the “political branches of our government … have the ability to grant some modicum of relief to those affected.”
So what should the political branches do now? The president’s commission made no recommendations because that question was beyond its mandate. But there are good moral and practical reasons to take action.
First, the wrong that was done must be acknowledged with something more than words. Financial compensation, while an imperfect remedy for injuries that didn’t involve money, is often the best we can do. A government compensation program could help the victims heal emotionally, and it could encourage further reconciliation between the two countries. It could promote trust in our government’s ability to voluntarily recognize and right past wrongs. It would also send a clear message that today’s research is conducted differently and that what happened in Guatemala was an atrocity not to be repeated.
There are clear precedents for a remediation program in similar cases. More than 20 years ago, faced with a failed lawsuit brought by people exposed to ionizing radiation during American nuclear experiments, Congress passed the Radiation Exposure Compensation Act of 1990; it provided partial restitution to people who could document their illnesses and their residence at the affected site when the exposure occurred. The government also provided redress for victims of the infamous Tuskegee study that was conducted in the mid-20th century. In that case, researchers, some of whom were also involved in Guatemala, observed the effects of untreated syphilis in poor black men for decades after penicillin became the recommended therapy. (Unlike the Guatemala studies, Tuskegee did not involve intentional infection, although in both cases, the subjects had not consented to participating in research.) As part of a legal settlement, the government adopted the Tuskegee Health Benefit Program, designed to ensure lifetime health and medical benefits as well as burial services for study subjects and their wives, widows and children; it also provided federal grants to promote ethical behavior in research and health care.
To its credit, the federal government has already done more than merely apologize for what happened in Guatemala. In addition to the investigation undertaken by the president’s commission, the Centers for Disease Control and Prevention will invest an additional $775,000 to support the Guatemalan government’s efforts to improve surveillance and control of H.I.V. and other sexually transmitted diseases there. The National Institutes of Health is also committing $1 million for research to evaluate possible revisions to the current regulations governing research on human subjects, and the C.D.C. is working to improve training in research ethics.
Those efforts — announced the same day the government sought to have the Guatemalans’ lawsuit dismissed — are laudable, but not enough. By focusing exclusively on the future, they leave those Guatemalans who were directly affected by past American research uncompensated. There are some complicating factors. The paucity of clear records will make it hard to determine who should be compensated, and by how much. The Guatemalan government’s involvement, while not absolving the American researchers, should be taken into account in assessing how much responsibility Americans have for providing redress. Nonetheless, we may be on our own. Guatemala published its own report on the studies earlier this year, but it faces many domestic problems, from extreme drug violence and corruption to widespread malnutrition, that make it unlikely to to do much more for the study victims.
Congress and the administration must step up more than they have, by offering financial restitution to Guatemalans with plausible claims of harm. Even if the lawsuits were appropriately dismissed, justice has not been done.
I. Glenn Cohen, an assistant professor at Harvard Law School, is faculty co-director of its Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics. Holly Fernandez Lynch, a lecturer at Harvard Law School and the Petrie-Flom Center’s executive director, was on the staff of the Presidential Commission for the Study of Bioethical Issues in 2010 and 2011. N.Y. Times Op/Ed, July 4, 2012.