Saturday, December 27, 2003

The Ghost of Medical Atrocities: What's Next, After the Unveiling?:
"…since 1972, when the American public first learned about the Tuskegee syphilis research that subjected African-American men to scientific experiments without their consent, the medical profession has had much explaining to do about its past.

Since then, several disturbing instances have come to light. In those cases, scientists, physicians and the government-sanctioned research or treatments that we would today consider unethical, like trials of untested vaccines or medications on mentally retarded children and prisoners."

Since 2002, five states — Virginia, Oregon, North Carolina, South Carolina and California — have publicly apologized to people who were forcibly sterilized under laws in effect from the early 1900's until the 1970's. Thirty-three states enacted such laws in this period, and about 60,000 women and men were sterilized. All were deemed "unfit to reproduce" by the medical experts of the day.

When these sterilization laws were written, many subscribed to a simplistic version of genetics called eugenics and hoped to improve American society by encouraging the "healthy" to reproduce while simultaneously preventing those with "deleterious inherited traits" from doing so. Under this rubric, mental retardation, insanity and even criminal behavior were considered hereditary and the "carriers" of these traits a danger to future generations.

Sadly, those targeted for reproductive quarantine were already defined as outcasts by a white majority: the mentally ill or retarded, "sexual deviants," the impoverished, African-Americans and immigrants.

The recent series of public apologies for forced sterilizations has unfolded with markedly different results, depending on who did the apologizing and the motives of the person or group.

Reflecting on her experience as a member of the citizens committee that convinced President Bill Clinton in 1997 to apologize for the government's role in the Tuskegee syphilis experiments, Susan Reverby, a historian at Wellesley College, said: "There needs to be more than a television talk show format of confession and a pledge for repentance. Relying only on emotion, while critical and cathartic, is a temporary fix, at best."

These apologies would be far more meaningful if they prompted us to reflect on some troubling aspects of medical research financed by federal agencies and American pharmaceutical companies in developing countries today, like experimental drug trials in Africa, where there are markedly less strict regulations on patients' rights.

Perhaps the cruelest aspect of such trials is how comparatively little these federal agencies or companies do to ameliorate or prevent the scourges that are killing Africans and others by the tens of thousands every day.

AIDS, tuberculosis, malaria, measles and diarrheal diseases are all major killers that we can actually do something about now. Decades hence, will our successors conclude that the impulses that nurtured experiments like Tuskegee or public health policies like eugenic sterilizations simply moved offshore in the early 21st century?

http://www.nytimes.com/2003/12/23/health/23ESSA.html?pagewanted=print&position=

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