Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies.
Direct-to-consumer genetic testing (DTC-GT) has sparked much controversy and undergone dramatic changes in its brief history. Debates over appropriate health policies regarding DTC-GT would benefit from empirical research on its benefits, harms, and limitations. We review the recent literature (2011-present) and summarize findings across (1) content analyses of DTC-GT websites, (2) studies of consumer perspectives and experiences, and (3) surveys of relevant health care providers. Findings suggest that neither the health benefits envisioned by DTC-GT proponents (e.g., significant improvements in positive health behaviors) nor the worst fears expressed by its critics (e.g., catastrophic psychological distress and misunderstanding of test results, undue burden on the health care system) have materialized to date. However, research in this area is in its early stages and possesses numerous key limitations. We note needs for future studies to illuminate the impact of DTC-GT and thereby guide practice and policy regarding this rapidly evolving approach to personal genomics.
Department of Health Behavior and Health Education, University of Michigan School of Public Health, 1415 Washington Heights, Ann Arbor, MI 48109, USA.
J Scott
JS
Roberts
Jenny
J
Ostergren
Consumer genomics; Genetic testing; Health ethics; Health policy; Personalized medicine