The President's Commission ponders global safeguards in research

An article by Mike Stobbe on global research ethics is doing the rounds: my Google Alert has been sending me its many incarnations, as the piece seems to have been sold and resold to various news outlets. Titles vary from 'Ugly US medical experiments uncovered' to 'Shameful past of medical trials prompts new US investigations' and all sorts of other permutations. The first line of the article, though, is not promising:

Shocking as it may seem, US government doctors once thought it was fine to experiment on disabled people and prison inmates.

It should not be too shocking, because the National Institutes of Health sponsor and conduct research studies involving the disabled and prisoners right now. It was not just the populations that were the problem with those experiments, of course. It were the procedures, and more specifically, studies in the past that involved deliberate infection of healthy (but vulnerable) persons. Stobbe has himself sniffed around in the archives to find some more skeletons in the US research closet, and adds them to the scandals we already know: Tuskegee, Willowbrook, the Jewish Chronic Disease Hospital, the AZT trials, the Trovan study. He leavens his account with an indication of how health research has gone global: drug studies, once almost exclusively conducted in the US on prison populations, has been redirected to developing countries in order to evade stricter regulations at home and to hold down study costs.

This potted history is a lead-in to last week's meeting of the Presidential Commission for the Study of Bioethics Issues. The Commission devoted an afternoon to comments and discussion about global health research ethics, Commission having been given two tasks by President Obama: to investigate dubious US government funded studies in Guatemala in the 1940's, and to see what system of protections and safeguards exist to ensure that similarly abusive research does not happen. This is an enormous task, and the Commission has little time to complete its mission. They did invite an amazing array of experts for the session on March 1st that is well worth watching. What struck me, however, was the public comment session: a fair number of people stood up to give personal testimony of how they were subjected to secret government experiments, involving electroshock treatments, mind control, torture and so on, followed by way too much information about physical and psychological symptoms. Either mentally unbalanced persons are drawn to commissions about abusive research like moths to a flame, or there is much more abusive research taking place in the United States than we know about.

UPDATE (March 10th): I was amazed by the testimonies during the public comment session of the Presidential Commission. Those over at Are You Targetted? are not amazed at all by the content of the testimonies, where citizens claimed to be victims of abusive and covert state-sponsored research, but are amazed by the fact that the news outlets did not seem to cover this part of the proceedings at all. It is strange that the high drama and vividness of these testimonies was not considered newsworthy.