Tuesday, September 20, 2011

TUSKEGEE EXPERIMENT AND APPOLOGY

News that the U.S. government willingly infected Guatemalans with gonorrhea and syphilis without their permission from 1946 to 1948 gives new credence to often dismissed claims by African-Americans and Latinos of government-backed conspiracies to harm them. As ridiculous as many may find such claims, unfortunately, history such as this supports their suspicions. It's very hard not to recall the Tuskegee Syphilis Study, better known as the Tuskegee Experiment.

From 1932 to 1972, physicians from the U.S. Public Health Service recruited 399 black men, the majority of them poor, from the Tuskegee, Alabama area to purportedly provide them with medical care they could not afford. Instead, the many men, who had syphilis, received little care. In fact, the U.S. Public Health Service intended all along to do nothing. The study's purpose was to observe the progression of syphilis, not to treat it. So, for 40 years, government-sanctioned medical professionals sat idly by as scores of black men died from a curable disease.

Reporting on the story on July 26, 1972, the New York Times referred to the Tuskegee Experiment as the "longest running non-therapeutic experiment on human beings in medical history." Because of the Tuskegee Experiment, it has been increasingly difficult for many medical professionals to recruit African-Americans specifically for clinical trials that could help fight key diseases and conditions that affect them.

In August, Doreen Gentzler from NBC's Washington D.C. affiliate helmed a special report about the lack of African-American participants in clinical trials. Noting that only one percent of current clinical trial participants are African-American, in that report, Gentzler and Dr. Monica Swain, who are both white, shared information that highlighted not just the paucity of clinical trial participants but also cited the Tuskegee Syphilis Study as one of the primary reason why.

Statistics cited in a 2009 report on racial differences related to parental distrust of physicians and medical research by the University of Pittsburgh's Dr. Kumaravel Rajakumar "found that 67 percent of African-Americans distrusted the medical establishment compared with 50 percent of white parents." And, interestingly, such distrust was found in all levels of the African-American community, regardless of income.

This level of distrust is obviously not healthy for many reasons. Chief among them is that it hinders the medical community's ability to effectively combat diseases. African-Americans die of many diseases like breast cancer and diabetes at higher rates and, in order to pinpoint why, medical research is a necessary evil. But, as Somnath Saha, M.D., M.P.H., of the Portland VA Medical Center in Portland, has noted, "If we want minority communities to participate in our work, we must first fix the racial and ethnic imbalance that continues to tilt our ivory towers."

Righting those towers with appropriate representation doesn't mean that all will be right in the world. After all, the African-American nurse Eunice Rivers was very much a part of the Tuskegee Experiment. In fact, many of the participants probably participated because of Rivers's involvement so it's deeper than having a few non-white faces. Instead there is a pressing need for black and brown medical professionals who will not just execute experiments that others have decided that are needed. There is a need for medical professionals who will identify conditions and diseases that cannot be ignored and then design ways in which they can be addressed.

The road to creating African-American trust in particular in medical institutions, especially government-backed ones, will be hard. Even now, it is not uncommon to hear African-Americans assert that HIV/AIDS is indeed a man-made disease that was purposely put into the black community. While these claims seem ridiculous to other Americans, African-Americans know of other "ridiculous" situations that have turned out to be horrifically true.

With former President Bill Clinton issuing a formal apology from the federal government for the Tuskegee Syphilis Study in 1997, not to mention the congressional reforms introduced in the 1970s, along with Secretary of State Clinton standing up strongly today in the wake of this Guatemalan discovery, Washington certainly has a new attitude. Consistent and caring outreach from the government and the medical community as a whole will continue to create goodwill and, in time, save more lives.

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