In early October, the Yale Center for Clinical Investigation (YCCI) hosted its first ever “Innovation and Diversity Summit.” Focused on Patient-centric approaches to care and research that evolved alongside political definitions of human rights, the summit showcased a number of high-profile speakers including employees from the U.S. Food and Drug Administration, Yale School of Medicine faculty, and representatives of the Henrietta Lacks’ family.
The first speakers, RADM Denise Hinton and CAPT Richardae Arajo of the Navy and the FDA, commented on how partnership between governmental and community organizations will help build trust with minorities like Latinos and Blacks. Owing to unethical or insensitive projects like the Tuskegee Syphilis study and unauthorized genetic harvesting from Henrietta Lacks, those communities approach institutional medicine with skepticism, according to the two speakers.
Next, Allen Hsiao, MD FAAP, chief medical information officer at Yale School of Medicine and New Haven Health, explained how electronic health records can be used to engage minority populations in clinical trials, to help drive better health solutions in a way that remains sensitive to historical considerations. Tesheia H. Johnson, MBA, MHS, chief operating officer for YCCI, emphasized the medical urgency of encouraging minority participation in studies. She said that more people from communities that suffer from medical disenfranchisement and exploitation ought to be recruited for trials, to ensure scientific progress isn’t unbalanced.
Victoria Baptiste, the great-granddaughter of Henrietta Lacks, spoke next. The Lacks cell line (HeLa) was the first to be made “immortal” in laboratories, and contributed to medical advances including the polio vaccine. At the time the cells were extracted, Lacks was not asked for permission, and the subsequent legal disputes over who owned the cells and their commercial legacy helped define important aspects of law, as well as ethical considerations for researchers. Speaking as a nurse, Baptiste said medical professionals have a duty to inform patients of their rights.
Quincy Birdsong, EdD, executive director for research administration for the WellStar Research Institute delivered an overview of historical exploitation of minority communities for medical research. He used the opportunity to emphasize the need for fairness.
After Birdsong, a panel including faculty, industry, and community members discussed how to encourage voluntary minority participation in research, an important refrain during the day.
Finally, Eric Velasquez, MD, professor of medicine and chief of cardiovascular medicine at Yale offered a practical and pragmatic case for representing everyone in medical research. His belief in the utility of broad representation, Velasquez said, drives a study in which he’s working toward a 40 percent African American enrollment in a study of how loop diuretics are used to treat people at risk of heart failure.
Reporting contributed by Jeanna Lucci-Canapari