Researchers at the University of Oregon have developed new guidelines to make genetics studies more inclusive and equitable. It’s an area where medical science has had a checkered past.
Historically, there are numerous cases of Black and Indigenous people being exploited in genetic studies. Consider Henrietta Lacks, an African American woman whose cancer cells were taken without consent in the 1920s and used to create a cell line still used in medical research today.
Given the bioethical concerns of many communities of color, UO History professor Arafaat Valiani and his team invite geneticists and researchers to embrace a different approach to their work.
“It builds off something called Community Based Participatory Research where communities participate more actively in medical research," said Valiani. "So, rather than just supplying blood samples or gene samples, they’re part of the whole research process.”
The recommendations were published in the December issue of the International Journal for Equity in Health.
When a group wants to participate in genetic studies, Valiani said it’s an opportunity to practice biomedicine differently. Communities of color can be partners in the research process and participate in designing studies by incorporating their health priorities.
The "genomic divide" is described as the disparity between the genomic information available for people with a European background and the genetic information available for black and Indigenous populations.
Valiani said bridging the “genomic divide” will benefit marginalized groups and decrease health disparities including lack of access to health care, language barriers, and lack of health insurance.
“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.”
These new 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, Valiani said.
Valiani is an associate professor of history and an affiliated faculty member in the Global Health Program in the College of Arts and Sciences at University of Oregon. His team of co-authors include faculty members at Arizona State University, Trent University, and Cumming School of Medicine at the University of Calgary.
