How historical harm can stall the promise of precision medicine

Physicians can now use specific treatments tailored to their patients’ individual needs, environment and genetic profile thanks to advances and application of genetic research.

Precision medicine practices also hold promise to reduce health equity gaps, but despite these advances, human genetics research can still cause harm to historically marginalized or excluded populations in health care, according to Frederick Chen, MD, MPH, the AMA’s chief health and science officer.

Dr. Chen, a family physician and professor at the University of Washington School of Medicine, is joined by other experts who share historical and modern context for why some patients may still be skeptical of advances in genetic medicine even as they seek to raise awareness of how precision medicine practices can help reduce health equity gaps.

You can explore the “Equity in our DNA: The Past and Promise of Genetics,” a series of four podcasts featuring an equity-focused examination of genetics hosted by Dr. Chen. These modules are each enduring material and designated by the AMA for 0.5 of AMA PRA Category 1 Credit™️.

1. “When Identity and Genetic Intersect”

   1. While patient care may benefit from the use of genetic testing and research, the patient’s identity and experience must be maintained as the center of any therapeutic approach. And there are steps that physicians and health professionals can take to ensure genetic research and its application are responsive to the needs and wants of affected communities, says Kellan Baker, PhD, MPH.
   2. He is the executive director of the Whitman Walker Institute, the research and policy arm of a Washington, D.C, federally qualified health center and community health system with 50 years’ experience serving diverse patient communities and with a focus on people living HIV.

2. “Patient Diversity and Genetic Databases”

   1. Advances in genetic research have allowed the development of tests, treatments and prevention strategies based on patients’ unique genetic characteristics, medical history and environment, according to Dr. Chen. But what happens to patients whose ancestry or ethnicity is not represented in the research dataset?
   2. Dr. Chen posed that question to Elizabeth Atkinson, PhD, an assistant professor of molecular and human genetics at Baylor College of Medicine whose research focuses on improving the study of the genetic basis of neuropsychiatric diseases in populations who have had little representation in scientific studies.
   3. Atkinson said that, since genetics research has been so Eurocentric, there is less understanding of the “genetic architecture” of those with African, Asian, Native American and other ancestry, which causes physicians to “be less able to pinpoint a potential cause of their illness.”
   4. “This really does trickle down into disparities in the implementation of genomic medicine,” she said. “We just have a better handle on what are the primary drivers of disease in Europe and less of a good handle outside of Europe.”

3. “The History of Physicians and the American Eugenics Movement”

   1. Dr. Chen’s guest on this podcast episode is Christopher Donohue, PhD, a science and technology historian at the National Human Genome Research Institute whose work focuses on the legacies of scientific racism and eugenics.
   2. “When you look at why various communities have suspicion of doctors and the medical profession or the public health profession, you will find the legacies of eugenics then are very real,” Donohue said, adding that eugenicists believed that “they were acting morally.”
   3. “This is what I think is the most difficult conversation to have,” he said.

4. “Misconceptions of Race, Ancestry and Genetics”

   1. “Misconceptions about race, ethnicity and genetics have a long and, frankly, shameful history in medical practice,” said Dr. Chen. “The miscategorization of populations has had dire consequences to testing, treatment and patient care approaches.”
   2. Dr. Chen asked Rina Bliss, PhD, an associate professor of sociology at Rutgers University, what steps physicians can take to ensure that inclusive and equitable practices replace race-based medicine and that a precision-medicine approach is adopted instead.
   3. Use race “in recruitment and talk about the role of race and racism in medical education, the clinical encounter, health disparities, all of that kind of thing,” Bliss said “But, once you get into the place where you’re not doing anything to do with racism, the categories need to fall away.
   4. “When we use the word ‘race,’ we are talking about that very socially constructed notion of folk categories,” she added. “These are fictitious categories in terms of biology. They’re not the same as genetic populations or ancestral populations, but they are meaningful socially, politically and economically.”

The podcasts are part of the AMA Ed Hub™️, an online learning platform that brings together high-quality CME, maintenance of certification, and educational content from trusted sources, all in one place—with automated credit tracking, and reporting for some states and specialty boards. 

Learn about AMA CME accreditation.