According to top US officials, abusing people in the name of research without their permission is awful, truly awful. In fact, it is so awful that it takes two Cabinet officials to apologize. That is, if the abuses were committed a long time ago, by researchers who are not around to be held accountable and if there is a friendly foreign government likely to be outraged about the abuse. However, US officials have so far been totally silent about horrific, unethical research conducted by US government researchers within the last decade.
Recently, Secretary of State Hillary Clinton and Secretary of Health and Human Services Kathleen Sebelius profusely apologized for a study conducted by the US Public Health Service in which nearly 700 incarcerated people and soldiers in Guatemala were, without their knowledge, deliberately infected with syphilis and other sexually transmitted diseases in order to test if penicillin could prevent infection. In a statement the two Cabinet secretaries expressed their outrage at “such reprehensible research.” In fact, so disturbed is the US government at this research that President Obama reportedly will call the Guatemalan president to apologize again.
This research violated the basic ethical principles that were supposed to guide research done on people — “human subjects research” in the professional lingo — since World War II. These principles were codified in the Nuremberg Code internationally and in the Common Rule guiding most research on people conducted or funded by US government agencies, including the Department of Health and Human Services of which the Public Health Service is a part as well as the Defense Department and the CIA. Fundamental to these and all other recent codes of research ethics are two basic principles: informed consent and minimization of harm. Thus, the Nuremberg Code, containing principles developed for the trials of German doctors who conducted horrific experiments in the Nazi concentration camps, begins with the principle of informed consent:
The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonable to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.
A little later the Nuremberg Code states the obligation of medical researchers to minimize harm resulting from experimental procedures:
The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury.
No experiment should be conducted where there is an a priori reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the experimental physicians also serve as subjects.
The Guatemalan study egregiously violated both these principles and deserves opprobrium. Rather than informed consent, the purpose of the study was deliberately hidden from those infected. These individuals were infected with dangerous, often deadly, illnesses. This research was awful, reprehensible, even horrific, and should never have been contemplated, let alone, conducted. I am glad that it only took a short time since historian Susan M. Reverby of Wellesley College revealed the abuses in a soon-to-be-published paper — available in preprint form on Reverby’s website — until US government officials vociferously condemned it.
But the US government does not need to look back nearly 65 years to find horrific research conducted by US government researchers. In June 2010, Physicians for Human Rights (PHR) issued a report, Experiments in Torture: Human Subject Research and Experimentation in the “Enhanced” Interrogation Program, that documented research and experimentation conducted in this century by CIA physicians and psychologists related to the abusive techniques used as part of the CIA’s “enhanced interrogation” torture program.
These researchers observed the torture of CIA prisoners in the so-called “black sites” and recorded the tortured prisoners’ responses. They paid special attention to the possibility that the torture would kill the prisoners. At times they recommended changes in torture techniques, such as the addition of salt to the water used for the partial drowning techniques that have come to be known as “waterboarding” so as to prevent possible death from induced electrolyte imbalance. This change in procedure allowed the prisoners to be waterboarded many dozens of times while preventing their escape into death. As PHR argued, the main reason for this apparent safety-related research was not the protection of prisoners, but to provide legal cover for the torturers and torture policy-makers by allowing them to claim that medical professionals were assuring the prisoners’ safety.
These abuses were reported by PHR in its peer-review report back in June. (I am one of the authors of that report.) Secretary of Health and Human Services Secretary Kathleen Sebelius was notified by letter of these abuses, abuses that violate the same research ethics principles — informed consent and minimization of harm — that were violated by the Guatemalan STD research. But, rather than express her outrage at this “reprehensible research,” Secretary Sebelius maintained her silence, as did every government official, other than a CIA press spokesman who denied our claims without presenting the slightest bit of evidence. Secretary Sebelius’ department referred an official complaint regarding unethical CIA research to the very same CIA that had already publicly denied the charges. So far, no government agency has committed to investigating these CIA abuses, which occurred far more recently than the Guatemalan horrors.
In response to the over 60 year old Guatemalan abuses, the Secretaries of HHS and State announced the creation of a commission that will undertake to assure that all human subjects research conducted by US researchers meets the highest ethical standards. As NBC News reported:
In addition to the apology, the U.S. is setting up commissions to ensure that human medical research conducted around the globe meets ‘rigorous ethical standards.’ U.S. officials are also launching investigations to uncover exactly what happened during the experiments.
If the purpose of the commission is really “to ensure that human medical research conducted around the globe meets ‘rigorous ethical standards,'” there cannot be a double standard. The same rules must apply to all researchers, everywhere, and to all research subjects, whoever they are. Ethics are there to protect the despised and powerless, not just those deemed deserving. Those researchers aiding CIA or other classified activities cannot get a free pass. We are at an important juncture, either unethical CIA research is investigated and those responsible are held accountable or the whole regime preventing unethical research that has been developed since the world became aware of Nazi horrors will collapse in hypocrisy. We cannot afford to let that happen.