Wednesday, January 4, 2012

American Journal of Public Health article calls for compensation for Guatemala Syphilis Experiment Victims

Last month, the American Journal of Public Health (AJPH) published an article directly related to the Guatemala Syphilis experimentation scandal, where the US Public Health Service killed at least 83 people in the process of purposely inoculating Guatemalan hundreds of subjects with venereal diseases. Even more egregiously, this was done without the informed consent of the subjects, who were mostly poor, or prisoners and insane asylum inmates.

Leading members of a Presidential Commission for the Study of Bioethical Issues that looked at the scandal harshly criticized U.S. researchers for covering up the research and its horrific outcome. John Donnelly at the official blog for the Presidential Commission said researchers did more than fail to get consent, they used "intentional deception" in their recruitment of the Guatemalan subjects.

The AJPH article, by Glenn Cohen (Harvard Law School and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics) and Dr. Eli Y. Adashi (Warren Alpert Medical School, Brown University), proposes that U.S. apologies for the affair are "insufficient" and the authors "call for a restitution program directed at the aggrieved parties."

"Surviving family members should also be made whole for harm incurred, whether direct (e.g., disease transmission) or indirect in nature," the authors contend. But "contrition is not enough and [the fact] that compensation and remediation are expected may obviate gross violations of research ethics in the future." I imagine the statute of limitations for these crimes are likely expired, or those guilty, who I suppose could be arraigned for murder, are all now dead.

But as Cohen and Adashi note, "Instead, history appears littered with misdeeds characterized by drawn-out, grudging acceptance of responsibility by the alleged perpetrator."

In March 2001, seven Guatemalans, "former soldiers, orphans, prisoners, and mental health patients in Guatemala who were purposefully infected with the venereal disease syphilis, or their heirs and the family members who were also impacted by the disease," filed a complaint (Garcia v. Sibelius) in the U.S. District Court for the District Of Columbia. Their attorneys note, "The class action lawsuit names several U.S. Government entities and addresses the despicable human rights violations that took place in the course of non-consensual human medical experimentation on Guatemalans in Guatemala by U.S. health authorities beginning in 1946." (See PDF of filing, or Spanish summary of the case.)

Cohen and Adashi contend that establishing a government compensation program "would allow Congress to end the pending litigation," and cite precedents for this.
Recognizing its responsibility in the face of a failed class-action lawsuit (Allen v United States),11 Congress passed the Radiation Exposure Compensation Act of 199012 to make “partial restitution” to eligible individuals “for the burdens they have borne for the nation as a whole."
Cohen and Adashi see this kind of result as "a swifter and surer form of resolution that can benefit a larger swath of possible victims rather than merely those who bring suit or are represented in the class action."

I don't know. While the Presidential Commission did a lot of investigative work, it's possible that discovery in the process of a suit could bring up more vital information. On the other hand, the victims have been waiting for decades. As Cohen and Adashi point out, a class-action lawsuit brought on behalf of the Tuskegrhee experiment victims was settled out of court for $10 million dollars.

In any case, the article and its subject matter deserve wider circulation and discussion. For more on the Presidential Commission, see Cheryl Welsh's article at Daily Censored, "Bioethics Commission Failed Obama’s Mandate in New Report."

A selection from her article:
The Commission issued a report last December 14th and concluded that current U.S. rules are adequate and would prevent such abuses from happening again. 
However, the Commission disregarded the lack of legal reforms for nearly half a million victims of unethical Cold War government research. The Cold War research was often conducted in secret and without consent. The ethical consensus today is that a person must agree to participate in any research and must be informed about the possible risks, known as informed consent. But bureaucratic roadblocks prevented crucial legal reforms from being implemented, including the requirement of informed consent in classified research. Today, U.S. law still allows for a waiver of informed consent.... 
The Common Rule is found at 45 U.S. Code of Federal Regulations (CFR) 46. CFR 46.101(i) allows a director of a federal department or intelligence agency to waive any of the Common Rule requirements, including the informed consent requirement and to do so in secret. The waiver effectively nullifies the regulations, and as happened in past Cold War experiments, allows for a complete lack of protections for human subjects in classified research, at the discretion of top officials. 
The endnotes of Obama’s Commission report briefly mentioned the current rules that cover classified research; an Institutional Review Board (IRB) must include a nongovernmental member and must review classified research, and expedited review is not allowed. However, without the consent requirement, U.S. rules still fail to meet even the minimal standards for adequate human subject protections today. 
Nonconsensual human experimentation is a violation of the Fourth, Fifth and Eighth Amendments of the U.S. Constitution. The U.S. government has acknowledged as much in a U.S. Department of State report and past presidential commission reports.... 
It is true, most experts believe that the ethical standards and U.S. rules in place today would prevent the large numbers of Cold War experiments from happening again. While that may have been the thinking of the Commission, this disregards the overwhelming evidence that the legal requirement of informed consent in classified research is essential for adequate human subject protections.

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