Why Are African-Americans Underrepresented In Medical Studies?

The troubling racial history of U.S. medical research feels fresh to black Americans.

When an influential Baptist minister in Harlem interrupts his Sunday service to urge parishioners to sign up for a big science study, you know something’s up.   Kolbi Brown (left), a program manager at Harlem Hospital in New York, helps Karen Phillips sign up to receive more information about the All of Us medical research program. Elias Williams for NPR The study -- called All of Us -- is funded by the National Institutes of Health. As the Rev. Dr. Calvin O. Butts III of Abyssinian Baptist Church recently explained to his congregation, the project “aims to engage 1 million participants of all ethnicities, to improve our ability to prevent and treat disease based on individual differences in lifestyle, environment and genetic makeup.” Butts thinks the study is important, and agreed to help the researchers get the word out -- they need samples of blood, and detailed medical histories and exams from a diverse study population. Some parishioners were enthusiastic, but many weren't. Medical Research's Long, Troubled Racial History Is One Reason Why The wounds are still fresh for many black Americans, NPR health correspondent Rob Stein reminds us in his story this week. Memories of the horrific, four-decade long Tuskegee study, which involved letting black men die from syphilis without treatment, and the troubling story of Henrietta Lacks, a woman with cancer whose cells were used for decades by drug companies and in academic research without her permission, have sewn mistrust across generations of African-Americans.   Deborah Fleming declined to provide her contact information during the block party. She says she hesitated because of abuses of African-Americans that have occurred during medical research in the past. Elias Williams for NPR Stein’s story is part of a series pegged to a new poll by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health. The poll found that about a third of African-Americans say they have experienced discrimination at a doctor's office or health clinic, and about 20 percent avoid medical care because of concern about discrimination. Discrimination On The Job Gene Demby, from NPR’s Code Switch team, notes other troubling findings in the poll: “At least half [the African-Americans polled] said they had personally experienced racial discrimination in being paid equally or promoted at work, when they applied for jobs or in their encounters with police.” As Brakkton Booker, an NPR political reporter, finds in his research, prosperity doesn’t necessarily shield you from that kind of bigotry. NPR will be releasing the results from other groups polled -- including Latinos, whites, Asian-Americans, Native Americans and LGBTQ adults -- over the next several weeks. And in Shots we’ll continue to delve into the long-lasting health effects of discrimination. Your Shots editor, Deborah Franklin You received this message because you're subscribed to our Health emails. |  Unsubscribe  |  Privacy Policy | NPR 1111 N. CAPITOL ST. NE WASHINGTON DC 20002