More on the Guatemala Syphilis Scandal
The Presidential Commission for the Study of Bioethical Issues concluded its investigation of the horrifying Guatemalan syphilis experiments this week, and began to consider some new regulations. A formal report will be sent to the President later this month, and the Guatemalan government is expected to release its own report soon.
The hearing included appalling details of abuse, some of which are detailed in the New York Times report. The Commission did not shy away from forthright denunciation of this "very dark chapter in the history of medical research sponsored by the U.S. government." It also noted that the "science" involved was shoddy and never published, and that the physician in charge took pains to keep the work secret. The National Archives have released his documents, with only minimal redaction to avoid identifying patients.
The best headline — and article — about the hearing came from ABC News:
Syphilis Experiments Shock, But So Do Third World Drug Trials
Most observers agree that the specifics of the old experiments are unlikely to occur today, but also that other abuses are not only possible but very likely to be continuing. Arthur Caplan explained that this is in part a recent development:
About a decade ago when the human genome was being mapped, companies were excited about exploring new drug options, and private funding expanded. "We began to see big money come from pharma, intending to sell in the developed world but trying it out in poor nations because it could be done cheaply and faster. They face less vigorous regulatory oversight."
The Commission members heard a report from an international panel about the effectiveness of federal rules and international standards. The recommendations are summarized here, and the 47-page report [pdf] is linked here. Most of its suggestions are disappointingly anodyne (respect, community engagement, ethics training, transparency). They do recommend that the U.S. should set up — as many other countries have — a program for compensation of research subjects who may be at risk, perhaps some kind of indemnity insurance. Said Commission Chair Dr. Amy Gutmann:
"The international panel felt strongly that the U.S. was an outlier in not specifying any system of compensation for research subjects, other than you get a lawyer and you sue."
That sounds like a sensible move, but isn't it likely to turn rather quickly into a mere cost of doing business?
Previously on Biopolitical Times: