Op-Ed: Compensation

June 21, 2012

(Originally posted January 12, 2012)

By Ruth Faden


The federal government made two back-to-back announcements this week regarding the Guatemala Syphilis Study it conducted in the 1940’s, which deliberately infected people with syphilis and other venereal diseases.


On Monday, the US Department of Justice introduced a motion to dismiss a class-action lawsuit filed by hundreds of Guatemalans, claiming sovereign immunity under the Federal Tort Claims Act. “This lawsuit is not the proper vehicle — and this Court is not the proper forum — through which the consequences of this shameful conduct may be resolved,” the motion read.


The next day, the U.S. Department of Health and Human Services (DHHS) announced it will increase its investment to fight STDs in Guatemala by $775,000; it currently supports 60% of the Guatemalan Ministry of Health and Social Assistance’s (MSPAS) program. The Department will also spend an additional $1 million to “evaluate the impact of the revisions to the HHS regulations governing human subject research that are currently being considered.”


Meanwhile, the state of North Carolina is also dealing with its own recompense for past injustice, with a task force recommending Tuesday that the state pay $55,000 to each living victim of the state’s forced sterilization program. If adopted by the state legislature, it will be the first compensation for victims of a state-run eugenics program, which were popular in the 20th century.  North Carolina, however, is regarded as having one of the most aggressive and long-lasting, from 1929 to 1974.


We do not know if the $1.8 million from DHHS is what the Department of Justice had in mind as the (sole) “proper forum- through which the consequences of this shameful conduct may be resolved.”  If it is, that’s problematic.


Here is why:


There are apparently six people still alive today (that number is pending confirmation) who were used in these morally reprehensible experiments.  Putting aside the more complicated question of what, if anything, is owed the children of the subjects who are no longer living, there is no question that these six people were horribly wronged by both specific individuals and also the US and Guatemalan governments.  While financial compensation is not a perfect remedy, it is a fitting one.


My colleague Matthew DeCamp, M.D., Ph.D., a Greenwall Fellow at the Berman Institute who studies intergenerational justice, agrees there is a strong moral case for compensating living victims of unethical research, even if the perpetrators cannot be held responsible:  “Justice between generations, both past and future, remains a contested notion in ethics and policymaking.  When victims of the past are identifiable and still alive, the case in favor of compensation is strong, even if the present generation did not commit or benefit from the past harm.  Determining the type and amount of compensation – as well as how to distribute its cost – is difficult but should not distract us from publicly recognizing and appropriately compensating past injustices.”


The US government has twice provided financial compensation to people who were subjects of government-sponsored unethical experimentation.  In the infamous Tuskegee syphilis study, in which patients were not deliberately infected as in Guatemala but were deprived of existing treatments and horribly misled about their care, a $10 million settlement included $37,500 and lifetime health benefits for each living victim.


During the Clinton Administration, I chaired the Presidential Advisory Committee on Human Radiation Experiments (ACHRE), which recommended financial compensation for cases in which there was no prospect of medical benefits for the subjects, or in which subjects were deliberately mislead and suffered harm as a result.  The government reached a settlement of $4.8 million with one survivor and 11 family members of deceased victims.


What was done in the name of science was no less unethical, and the US government no less implicated, in Guatemala than in these two other inexcusable cases.  That the research occurred outside the United States on subjects who are not US citizens is morally irrelevant to the question of whether financial competence is appropriate.


Financial compensation is not, of course, the only appropriate remedy when serious moral wrongs occur.   The official statements of apology by President Obama, Secretary of State Hillary Rodham Clinton and HHS Secretary Kathleen Sebelius expressing ‘deep regret’ were necessary and important, as was the full investigation aimed at preventing such a travesty of science and morality from occurring again.  President Clinton made similar apologies for the human radiation and Tuskegee studies, unfortunately many decades after the fact.


The $1.8 million investment by the HHS, also aimed at prevention, is both symbolically and practically important.  However, this still leaves six people alive today who suffered the most offensive indignities and immoral treatment.   Money can never take away the suffering they’ve endured, any more than it can for victims of sterilization abuse in North Carolina..  But if official apologies and renewed efforts to improve human subjects protections were not sufficient remedies for American citizens who were similarly so subjected, why should it be enough for them?



However, like these past cases and now in North Carolina as well, the unknowing and unnecessary victims of unethical practice should be directly compensated as well.  Money will never take away their suffering or give back what they’ve lost.


Ruth Faden, Phd, MPH
is the Philip Franklin Wagley Professor of Biomedical Ethics and Director of the Johns Hopkins Berman Institute of Bioethics. She is also a Senior Research Scholar at the Kennedy Institute of Ethics, at Georgetown University.

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