“GENOMIC DATA SHARING: IMPROVING HEALTH, REVEALING SECRETS AND CATCHING CRIMINALS”
Genomics provides a powerful tool for diagnosing inherited disease and assessing one's lifetime risk of developing more complex conditions. Genomics can also connect us as a human species, revealing information about genetic ancestry and facilitating research into one's family tree. The potential utility of genomic information is chiefly dependent on our ability to amass large datasets, and no sector has been more successful at this than the direct-to-consumer genetic testing (DTC-GT) industry. It is estimated that more than 37 million profiles currently populate the major DTC-GT databases. This presents unique research opportunities, but it also opens the door to unexpected discoveries. In this session, I will explore how DTC-GT information is being used to improve health, reveal family secrets and ultimately to solve crime. I will focus on ethical concerns and policy implications, address common misconceptions and present data from ongoing research.
Amy McGuire is the Leon Jaworski Professor of Biomedical Ethics and director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She researches ethical and policy issues related to emerging technologies, with a particular focus on genetics and genomics, big data and the clinical integration of novel neurological devices. Her research is funded by the National Institutes of Health. McGuire has received numerous teaching awards at Baylor College of Medicine, was recognized by the Texas Executive Women as a Woman on the Move in 2016 and was invited to give a TedMed talk, titled “There Is No Genome for the Human Spirit” in 2014. She has served as a member of the National Advisory Council for Human Genome Research and as an adviser to the X Prize in Genomics. Currently, McGuire is on the board of the Greenwall Foundation and serves as a member of the advisory committee for its Faculty Scholars Program in Bioethics, is a Hasting’s Center Fellow, and is a member of the Scientific Advisory Board for Geisinger Research, The Morgridge Institute of Research and Danaher Life Sciences.