Debating wider participation in medical research

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    Ruha Benjamin is a sociologist

    Ruha Benjamin is a sociologist

    Author Ruha Benjamin says “the legacy of Tuskegee” is too often used as shorthand to refer to a perceived mistrust among black people and a reticence to participate in biomedical research.

    On July 29, scientists and science enthusiasts gathered for a Twitter chat: “Remembering the Tuskegee Syphilis Experiment.”

    The moderators asked participants: “42 years later, are African Americans still afraid of being exploited by science?”

    Beginning in the 1930s, the U.S. government enrolled African American men with syphilis into the now-discredited study. Researchers promised treatment for these men but withheld medicine from the participants.

    After the online discussion, health reporter Taunya English spoke with sociologist Ruha Benjamin, an assistant professor at Princeton University and author of “People’s Science: Bodies and Rights on the Stem Cell Frontier.”

    Benjamin says the term “the legacy of Tuskegee” is too often used as shorthand to refer to a perceived mistrust among black people and a reticence to participate in biomedical research. She’d like the legacy to include a continued examination of the institutions working toward medical innovation.

    “What kinds of practices are still with us in the way that we practice medicine and conduct research?” she said.

    “The people who participated in Tuskegee–many of them had very good intentions, we would cast them now as sort of liberals,” Benjamin said. But, she said, those good intentions were not enough to protect the men in the Alabama study.

    There have been many patient protections erected in recent decades to safeguard study participants, including required informed consent and institutional review boards. With those protections in place, some investigators argue that it is time to “get past” Tuskegee.

    Benjamin counters that it is time to reframe mistrust among black Americans not as an obstacle to overcome but as insight into the flaws of the medical and social system.

    “Rather than thinking about ‘getting past’ Tuskegee what can we learn from it?” she said. “It’s with us whether we want it to be or not, so why not explicitly think about what we can learn and do differently?”

    Advocates for wider research participation, say that at the population level, there are high stakes—perhaps even life or death stakes–for continued low participation in science innovation.

    Benjamin said continued reluctance to join biomedical research needs to be considered within a culture where many blacks and Latinos don’t have access to affordable quality health care.

    “Many of these same people are being solicited or asked to participate in research,” she said. “There’s a paradoxical dynamic there, where you don’t have access to the basics, but you are being asked—or encouraged–to participate in something that’s experimental or cutting-edge.”

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