Testing: Then and Now

  • Posted on February 28, 2011 at 10:30 AM

A recent article by Mike Stobbe “uncovers” the little known history of human experimentation in the United States.

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

Ethics is somewhat progressive.  What once seemed acceptable now seems abominable.  Yet, sometimes I have to wonder how some acts were ever justified.  Then again, there are throwbacks who still can justify their behavior, though it’s clearly unethical by contemporary standards.  Now, we apologize for past mistakes:

Much of this horrific history is 40 to 80 years old, but it is the backdrop for a meeting in Washington this week by a presidential bioethics commission. The meeting was triggered by the government’s apology last fall for federal doctors infecting prisoners and mental patients in Guatemala with syphilis 65 years ago.

U.S. officials also acknowledged there had been dozens of similar experiments in the United States -- studies that often involved making healthy people sick.

This ugly history of unethical human experimentation is not news to me.  American doctors conducted many studies using eugenically defined “undesirables”—convicts, disabled people, and the mentally ill—to test their scientific theories.  The AP article cited some horrific examples, which I’ll let you check out at your leisure.

Strikingly, though it was never considered particularly outrageous, once it was considered eccentric:

Prisoners have long been victimized for the sake of science. In 1915, the U.S. government’s Dr. Joseph Goldberger - today remembered as a public health hero - recruited Mississippi inmates to go on special rations to prove his theory that the painful illness pellagra was caused by a dietary deficiency. (The men were offered pardons for their participation.)

But studies using prisoners were uncommon in the first few decades of the 20th century, and usually performed by researchers considered eccentric even by the standards of the day. One was Dr. L.L. Stanley, resident physician at San Quentin prison in California, who around 1920 attempted to treat older, “devitalized men” by implanting in them testicles from livestock and from recently executed convicts.

Newspapers wrote about Stanley’s experiments, but the lack of outrage is striking.

I suspect eugenics theories made it more socially acceptable here, just as it did in Germany.  However, there’s a chance that it is NOT over—perhaps these unethical activities have simply been moved off shore to target different vulnerable populations:

Last year, the U.S. Department of Health and Human Services’ inspector general reported that between 40 and 65 percent of clinical studies of federally regulated medical products were done in other countries in 2008, and that proportion probably has grown. The report also noted that U.S. regulators inspected fewer than 1 percent of foreign clinical trial sites.

Monitoring research is complicated, and rules that are too rigid could slow new drug development. But it’s often hard to get information on international trials, sometimes because of missing records and a paucity of audits, said Dr. Kevin Schulman, a Duke University professor of medicine who has written on the ethics of international studies.

So now President Obama has ordered an investigation.  Has research ethics really progressed?  Or is it just that society has progressed enough to express the outrage that’s due?

6 Comments on Testing: Then and Now

  1. sharon says:

    Thought provoking. But surely there has been progress. No researcher could gain physical access to prisoners for example today, firstly because they would not get ethics approval, secondly the prisoner would need to agree to particiapte (in writing) and thirdly, we now live in litigious times, so the risk of being sued is ever present. There are also bodies that act as ‘watchdogs’ in relation to the elderly, the mentally ill, prisoners etc to ensure their rights are respected. Another hurdle for todays researcher.

  2. Stephanie says:

    There has been progress. But I worry whether that progress is less with the researchers and more with the “developed” nations themselves.

    In the U.S. (and I suspect this would include Australia, most or all of Europe, and Canada as well), researchers cannot take advantage of vulnerable populations, at least we’ve made it more difficult for them to do so. But, if they’re doing most of their research other places, do those rules still hold?

    Perhaps this will sound ethnocentric or overly privileged, but I don’t think people who live in “undeveloped” and impoverished countries are particularly less vulnerable than prisoners, the mentally ill or the mentally disabled. If they do not have laws in their country protecting them and international laws are not adequately enforced, what is to stop researchers from doing the same thing to those populations that they once did here? Has their concept of ethics improved, or has their unethical behavior simply migrated?

    I don’t know. But I find the possibility disconcerting.

  3. sharon says:

    I suspect any Western researchers are still bound by their professional standards and code of Ethics, even when carrying out studies abroad. There are also many agencies working in developing nations who act as ‘watchdogs’. I think there are always risks with these things, but that woud be due more to individuals who are acting withouT integrity. Something you cannot prevent sadly.

  4. Stephanie says:

    We can’t prevent it, but that doesn’t mean we have to tolerate it. We can express outrage at not knowing, or when we learn of unethical behavior.

  5. kathleen says:

    There are a couple of very good books (I’ll come back-have to find the titles) on bioethics-that I think are eye opening on this subject.

  6. Stephanie says:

    I’ve never seen any books on the matter (I’d definitely be interested in titles), but I’ve found some good articles over the years. It’s interesting how information about this issue tends to trickle out, instead of the usual constant flow of other matters.

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