Genetic Crossroads

The intersection of biotechnology, reproduction and society.

Reflections on a Research Horror: No More Guatemalas

A reminder of why we need protections in medical research.

Historian Susan Reverby tripped off international headlines and a major diplomatic kerfuffle when she announced last month what she'd pulled from the dusty archives: revelations that during the 1940s, U.S.  medical researchers had deliberately infected hundreds of Guatemalan soldiers, prisoners, mental patients and children with syphilis (1, 2, 3).

One of the scientists most centrally involved, University of Pittsburgh public health professor John Cutler, was also a key investigator in the infamous Tuskegee study. In that instance of medical research gone terribly wrong, experimenters including health professionals observed the progression of syphilis in black sharecroppers without treating them from 1932 until the early 1970s, well after the development of cures.

Reverby's full account [PDF] of the Guatemala syphilis experiments, which will be published in the January 2011 of the Journal of Policy History, is available now on the Wellesley College website.

A number of the reactions to Reverby's revelations were along the lines of a headline that ran on a column in the Forth Worth, Texas newspaper: "Admitting a mistake, then moving on, is a sign of a strong nation."

Reverby herself has expressed caution about "moving on." She makes this point in several interviews (1, 2) and in the title of her post-revelation comment in Bioethics Forum: "After the Media Frenzy, Preventing Another 'Guatemala.'" She writes:

Once the initial shock is over, what do we want the Guatemala revelation to do? The debate on the necessity for protections in the developing world continues and perhaps this will be a reminder of why they matter.

I have tried to emphasize that Cutler was not just some aberrant monster. He thought the war on syphilis required these kinds of sacrifices. He thought he was doing good science.

In the current issue of The Nation, Patricia Williams echoes this theme [subscription required]:

It's important to understand how we repeatedly deceive ourselves into appalling forms of corruption by wrapping ourselves in the language of high standards....Rationalization has ever been thus: it's humanitarian in the long run. We confuse, in other words, motives and means.

Williams calls for "public conversation and review" of several areas that are currently worth worrying about:

  • The increasing conversion of research facilities into biodefense containment labs
  • Drug scandals such as those surrounding Vioxx and Avandia
  • Recruitment of very poor people as subjects in clinical trials, especially by drug companies
  • Inadequate consent procedures, especially in prisons and other institutions
  • "Germ line therapy and genetic manipulation will increasingly implicate future generations. We must ask ourselves if our present zeal for "transhuman," "gen-rich," "enhanced" versions of ourselves is but a vast experiment in narcissism."


Subscribe to Genetic Crossroads

Marcy Darnovsky, Ph.D., is Associate Executive Director at the Center for Genetics and Society.

more...