Prof. Wolf on Biobanks Sharing Genetic Risks With Study Participants

DNA
Tuesday, January 25, 2022

Consortium Chair Susan Wolf was quoted in the New York Times on whether biobanks should offer information about genetic risks to individuals participating in a biobank. Biobanks are large-scale collections of medical records, biospecimens, and DNA that researchers can use to study the health impact of genetic variants. Because biobank participants are often deidentified and may not expect to be receive information on their individual genetic risk, researchers face an ethical challenge when they discover a gene variant that may threaten an individual participant’s health. Prof. Wolf argues in favor of offering information to participants. “If you have information as a researcher that has profound potential implications for my health, then out of respect you ought to offer it to me. For you to simply sit on it is problematic.” Read the article on the New York Times website