For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection; Undark, September 30, 2019

Adrian Pecotic, Undark; For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection

To be equitable, genetics research needs more diverse samples. But collecting that data could present ethical issues.

"“When we do genetic studies, trying to understand the genetic basis of common and complex diseases, we’re getting a biased snapshot,” said Alicia Martin, a geneticist at the Massachusetts General Hospital and the Broad Institute, a biomedical and genomics research center affiliated with Harvard and MIT.

Research to capture these snapshots, called genome-wide association studies, can only draw conclusions about the data that’s been collected. Without studies that look at each underrepresented population, genetic tests and therapies can’t be tailored to everyone. Still, projects intended as correctives, like All of Us and the International HapMap Project, face an ethical conundrum: Collecting that data could exploit the very people the programs intend to help."