New Guidelines for Genetics Research Focus on Equity, Inclusion

Researchers at the University of Oregon have come up with new recommendations designed to promote inclusive and equitable genetics research, an area where medical science has had a checkered history.

Led by UO history professor Arafaat Valiani, a research team studied the historical experiences of people of color with medical and genetic research and developed new guidelines to ensure that people of color are included in such studies on terms that are equitable. Known as precision health equity, the recommendations call on geneticists and biomedical researchers to embrace a different approach to their work.

The recommendations were published in the December 2023 issue of the International Journal for Equity in Health.

Precision health is an emerging approach in clinical medicine that analyzes a patient's genome and its interactions with environmental factors. The core concept of precision health centers on comparing individual genomes with a database of disease-associated genetic markers associated with chronic conditions.

Given the histories and experiences people of color have had with science and biomedicine, Valiani and his co-authors invite geneticists and biomedical researchers to consider embracing the principles of precision medicine if such studies focus on communities consenting to participate.

"One of the central social determinants of health for people of color and Indigenous people is not being able to access primary care, particularly preventative care," Valiani said. "Precision medicine, and the human genomics tools that it's based on, are thought of by a cohort of medical researchers as a way to provide preventative care to these communities in conjunction with other initiatives to improve their health access."

Valiani is an associate professor of history and an affiliated faculty member in the Global Health Program in the College of Arts and Sciences. His team of co-authors include faculty members at Arizona State University, Trent University, and Cumming School of Medicine at the University of Calgary.

The guidelines build on insights from scholarship on Indigenous data sovereignty, which assigns to First Nations peoples the right to govern how their data is used. Precision health calls on research teams to develop meaningful and collaborative partnerships with communities interested in participating in genetic research. That allows those communities to have a voice creating data stewardship practices that govern how genomic data will be accessed, used and stored.

"Some communities are interested in seeing if they have traits for common conditions, such as diabetes, hypertension, high blood pressure, high cholesterol, fatty liver, certain cardiac conditions (certainly not all have these). And of course, some are not," Valiani said. "For those that are interested, community members may want to know in advance so they can consider whether they want to explore preventative care and the kinds of advocacy that requires."