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Clinical Trials Have A Tarnished Reputation In Minority Communities, But The Pharmaceutical Industry Can Fix That

Clinical Trials Have A Tarnished Reputation In Minority Communities, But The Pharmaceutical Industry Can Fix That
Posted By: Loren Moss on January 25, 2021

There is a lot of distrust between minority communities and the biotech industry, and the roots of discord run deep. Most people in the black community can tell you the basic story about the Tuskegee Syphilis study where the United States Public Health Service and the Centers for Disease Control infected unsuspecting black volunteers with syphilis, killing at least 128 victims. Fewer know that some of the same doctors, such as John Charles Cutler carried out similar experiments on Guatemalans without their knowledge, killing another 83 victims.

There is also the case of Henrietta Lacks. Born in 1919, the 31 year-old descendant of Virginia sharecroppers was suffering from cervical cancer when doctors took cells from her biopsy and cultured them for commercial distribution. Even today, her cells are used in medical research without her permission or even knowledge—simply do an internet search for “HeLa Cells.”
In 2002 the Navajo Nation banned research using Navajo DNA because of a long history of mistrust and abuse. Havasupai Tribe member Carletta Tilousi agreed to participate in a Diabetes study only to later find out that her and other members’ genetic material was being used without their knowledge or consent for studies ranging from mental illness, inbreeding, and even the tribe’s geographic origin.


With this history, it is no wonder that minority groups such as Native Americans, Latinos and African Americans are reluctant to participate in medical research, clinical trials, or even to trust the diagnosis and advice of medical caregivers. The pharmaceutical industry has a lot of work to do to regain this lost trust, and an ethical obligation to do so.
One of the most important ways that pharma and medical companies can do this is to ensure that their professional faculty adequately represents the diversity of the markets they serve, so that communities can understand that studies are “for me” rather than “on me.” This starts with outreach and hiring. Often qualified minority health professionals are so keen to serve that they jump straight into clinical practice and don’t consider a research or pharmaceutical development career.
Many firms have good intentions but don’t know how best to reach qualified minority candidates. This is where teaming up with HBCUs (Historically Black Colleges & Universities) and their counterparts in the Latino & Native American community can pay dividends. By offering opportunities to recent graduates and internships to current students, pharmaceutical and medical firms can source top talent, students can land rewarding careers, and these historically underserved communities can receive the care they deserve.

Photo by Department of Health, Education, and Welfare. Public Health Service. Health Services and Mental Health Administration. Center for Disease Control. Venereal Disease Branch (1970 - 1973).
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