In one among a series of exposes (they appear somewhere every year or so) of the clinical trials industry, Bloomberg news service reveals (yet again) something that drives me crazy. Quoting astonished ethicists – including Ken Goodman of University of Miami, whom the reporter brought to a clinical trials site – the reporters identify one of many clinical trials sites engaged in 
truly ugly exploition of research subjects. The setting is laid out like a script for a play (and indeed several plays have focused on clinical research abuses):
Oscar Cabanerio has been waiting in an experimental drug testing center in Miami since 7:30 a.m. The 41-year-old undocumented immigrant says he is desperate for cash to send his wife and four children in Venezuela.
More than 70 people have crowded into reception rooms furnished with rows of attached blue plastic seats. Cabanerio is one of many regulars who gather at SFBC International Inc.’s test center, which, with 675 beds, is the largest for-profit drug testing center in North America.
Most of the people lining up at SFBC to rent their bodies to medical researchers are poor immigrants from Latin America, drawn to this five-story test center in a converted Holiday Inn motel.
Inside, the brown paint and linoleum is gouged and scuffed. A bathroom with chipped white tiles reeks of urine; its floor is covered with muddy footprints and used paper towels. The volunteers, who are supposed to be healthy, wait for the chance to get paid for ingesting chemicals that might make them sick.
They are testing the compounds that the world’s largest pharmaceutical companies hope to develop into best-selling medicines.
Cabanerio, who has a mechanical drafting degree from a technical school, says he left Venezuela because he lost his job as a union administrator. For him, the visit to SFBC is a last resort. “I’m in a bind,” Cabanerio said in Spanish. “I need the money.”
Zeke Emanuel writes about coercion in research in the current
But the real chronicles – and most of the discussion – of abuses and frankly systematic neglect in the clinical trials industry has been published in newspapers, with quotes from astonished ethicists, and it is notable that the Bloomburg piece – like an equally amazing one in 1996 in the Wall Street Journal – have been greeted with the same kind of deafening silence that accompanied early newspaper accounts of the Tuskegee experiment. The piece has been published in at last count three newspapers.
The regulations as the piece points our are “porous,” enough so that some medical centers have had non-physicians conduct clinical trials for years with bogus credentials – faking a medical degree for example. The solutions proposed in bioethics to date have been less than imaginative, and nobody is stepping up to the plate from policy or pharma either.
In fact the single most apparent change in clinical trials has been the divestment of pharma in the clinical trials industry: one large phamaceutical company after another has decided that the best idea is to outsource them for lower cost – and to eliminate liability.
I cannot believe I am saying this, given my skepticism about national commissions in bioethics and their utter lack of effectiveness in recent years, but it is time for a national commission on clinical trials that focuses on these issues. Or better yet it would be great if a senator took up the challenge, as happened (to terrible effect, granted) in 1993 concerning emergency research. The commission should be – minimally – sponsored by the IOM and ASBH.
The poor, who are most vulnerable are being offered cash and promises of therapeutic efficacy (“depressed? got no money for psychotherapy? we will give you free evaluations and study medications…”) to serve as faceless guinea pigs in multiple and poorly policed experiments in labs that boggle the mind. Troy Duster famously referred to “credit card eugenics,” a new form of genetic selection dominated by a market rather than the state. I submit that clinical trials in the United States have become a “welfare Tuskegee.”
Not only African Americans, and not only a small town, and not with the deliberate and systematic involvement of public health authorities, there is nonetheless a broad and even systematic campaign that is ongoing to design clinical trials – the ads, the facilities, the trials themselves and the cash payments – in such a way as to deceive and endanger specific and well understood socioeconomic groups in society.
It is a new version of an old problem and we need to go from being astonished to being furious. Even if that means fighting your own university’s psychiatry department, or developing new roles that feel more like “ethics police” than like researchers. And I am skeptical enough to suspect that it is fear of our own institutions – most of whom benefit mightily from clinical trials – that plays a big role in preventing many of us in bioethics from studying or protesting research ethics abuses in our own institutions. 
The most prominent case of resisting that kind of pressure was that of Mary Faith Marshall (now of University of Minnesota), who famously fought against State sanctioned abuse of pregnant women in South Carolina and paid a significant penalty as a result.
Bioethics has been asleep at this switch for too long, teaching responsible research courses that hang on the Tuskegee experiment as though we have come so far in fifty years. Come so far? Tell that to Oscar Cabanerio. India, one of the worst offenders in research ethics for years, has done more to reform clinical trials than the US.