Twists and Unsuspecting Turns

In Uncategorized on April 26, 2010 at 8:57 am

Miss Ever Boys. I watched this film when I was a teenager and didn’t quite grasp the complete understanding of its implications on a people or for research. According to Agustín del Cañizo Fernández-Roldán (2004) “Miss Evers Boys (1997) is a movie based on a real fact happened in the State of Alabama (United States), where it was carried out a research work that begun in 1932 and was prolonged up to 1972. It consisted on watching the evolution of syphilis in black male patients, who were not given any anti-syphilitic treatment at any moment. Once the fact was public, a great polemic on the ethics of the research with human fellows was originated and publications dealt with this case. The movie, faithful as for the bottom of the problem, it’s made as a novel about a research team’s nurse and four black participants patients.”

The Tuskegee syphilis study has had significant repercussions for informed consent and human subject testing. Recently, these very issues came up again, this time with the Havasupai Indians. The Havasupai Native Americans have called the Grand Canyon home for many centuries. And for many years, the Havasupai have also called diabetes an unwanted friend. To many researchers at Arizona State, there was an opportunity to study the origins, effects, and cultural impact of Type 2 diabetes on a people. And to the Havasupai, who according to New York Times Amy Harmon “view their blood as sacred,” such a test was conducted out of a need to understand diabetes and to find a cure not to store their blood in biobanks to conduct additional studies. And that is the heart of the case; whether a geneticist received informed consent to conduct these additional tests. According to geneticist Stephen O’Brien who oversees the Laboratory of Genomic Diversity at the National Institutes of Health, “we have to communicate a hell of a lot better to the public what is going on when we put their specimens in our biobanks.”

Arizona State has reached a settlement with the Havasupai, but money is not the motivator here. There is a clash between cultures and communication. There is a delicate balance that has to be reached between research and culture; for help may be shunned if a people are skeptical about those who are conducting research and what their motivations may be.

To read more about the case, click here. Also, click here to watch the New York Times video on the Tribe.


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