A legacy of unethical studies complicates calls for greater participation by African Americans
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Late last year, Justina Crawford decided to swab the inside of her mouth for a saliva sample to do a DNA test.
Ms. Crawford, a 30-year-old working in Boston who is African American, had never done a DNA test before because she worried about who would have access to her genetic information. But her growing curiosity about her family history led her to set her reservations aside. “I want to know my roots,” she said, and purchased a kit from African Ancestry Inc., a DNA testing company.
Scientists and private genetic testing companies are making a push to enroll more African Americans in genetic research and databases. As the popularity and wider availability of genetic testing grows, so have calls from the scientific community about the need for genetic diversity in future research. In the past, genomic research was predominantly skewed to people of European ancestry. As a result, African Americans—as well as people of different demographic backgrounds—weren’t well represented in some important health research.
Alondra Nelson, professor of sociology at Columbia University, who has written extensively about the topic, cited a long history of “scientific racism,” such as the Tuskegee syphilis experiment conducted on African American men by the U.S. government that ran until 1972. Individuals in the study were not told they were infected with the disease or treated with penicillin. Exposure of these lapses led to changes in ethical rules.
“The mistrust never goes away,” says Professor Nelson.
In May, the National Institutes of Health launched the ambitious All of Us research program, with the goal of enrolling one million or more people of races, ethnicities and other groups that have been underrepresented in biomedical research. So far, following community outreach, 17% of the 36,539 participants in All of Us that have provided blood, urine, and other information identify as African American, which is “significantly more representation than in most studies and greater than the overall percentage of African Americans in the general population,” says Eric Dishman, director of All of Us. “The more data we gather, the more we’ll know about what makes people unique, which may, in turn, pave the way for more customized health care approaches for African Americans and many other underserved communities.”
Earlier this year, 23andMe, a direct-to-consumer personal genomics company based in Mountain View, Ca., launched a Global Genetics Project seeking to enroll people with four grandparents all born in western and central Africa and other underrepresented places. The projects can help fill in gaps in understanding about population genetics, but also can spark personal interest in health questions.
Rick Kittles, a professor at the University of Arizona College of Medicine and co-founder of African Ancestry Inc., which helps people of African descent trace their roots, said ancestry can play a role in assessing disease risk. But when he and Gina Paige co-founded the company, he says they purposely stayed away from testing for health conditions and agreed to destroy the DNA sample once the test is completed. “We share the same sensitivity the community shares,” says Dr. Kittles, who is African American. Broader health testing “is important but it has to come from the community demanding it.”
PHOTO: CITY OF HOPE
Doctors rely on population-wide studies to better assess an individual’s risk of getting a disease. Genetic testing from more diverse groups will lead to better understanding of the risks associated with particular genes, researchers say.
At a Boston event focused on DNA testing as a link to African cultural identity, Fabienne Mondesir, director of community engagement at Harvard Medical School’s Personal Genetics Education Project, gave a presentation explaining how the technology works as well as its current limits.
While the focus of the evening was ancestry and not health testing, Ms. Mondesir said it’s hard to talk about one without the other. She wanted the audience members to understand both how researchers might use information from ancestry tests to better understand health links as well as potential misuses of genetic information, including privacy concerns.
One June morning, Ms. Crawford sat in a sunny courtyard, discussing her test results with Marlon Solomon, president of the Afrimerican Culture Initiative, a Hyde Park, Mass.-based foundation that organized the Boston event.
“I think there is a benefit to DNA testing to learn health information,” says Mr. Solomon, who has a Nigerian father and African American mother. But his organization focuses on DNA testing as a way to build cultural identity. “For many people, there is stigma and trepidation about DNA tests,” he says. “But the desire for roots and identity is so strong that they are willing to take the chance.”
Ms. Crawford grew up in Pennsylvania. Her parents divorced when she was young and her mother raised her. She said she knew from her mother and grandparents that “we come from a lineage of slaves,” but not any detailed family history. She used African Ancestry’s test.
When she got the results, it showed a 99.7% maternal connection to the Bamileke people in Cameroon. “I didn’t even know where Cameroon is. I googled it,” says Ms. Crawford.
Ms. Crawford has since done research on Cameroon. A friend gave Ms. Crawford a book about Cameroon art. She shared the images with her mother. Mr. Solomon connected Ms. Crawford with a group in Boston that runs community projects in Cameroon. Eventually, she says, she wants to visit.
Ms. Crawford knows there is still more to learn about her DNA. But despite the positive benefits, Ms. Crawford says she does not want health information and is not yet ready to contribute her DNA for research—and may never be. Whatever comes next, she says, tears suddenly welling up in her eyes, “I want to have ownership of the experience.”
Write to Amy Dockser Marcus at firstname.lastname@example.org