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Genetic Databases and the Future of Medicine: Can Law and Ethics Keep Up? Perspectives and Analysis of a Conference


Genetic science and its clinical applications are advancing at an accelerating pace. However, they bring new ethical concerns over privacy along with practical concerns over the use and interpretation of genetic information. A conference held at Drexel University’s Thomas R. Kline School of Law in March 2020 explored the intersection of genetic science, law, and ethics to seek insights across disciplines on ways to balance scientific progress with these concerns. Experts in each of these fields focused on the distinctive benefits and risks of large genomic databases that provide powerful tools for advancing research and treatment but pose growing threats to the privacy of individuals whose genetic information they store. While genetic databases are helping clinicians to understand and treat a growing number of serious genetic conditions, they present risks of unauthorized disclosures of highly personal information. Their use in clinical care also raises practical concerns in the interpretation of ambiguous findings, the handling of unanticipated incidental findings, and the communication to patients of risks and uncertainties. Existing legal guidance and protections are woefully inadequate and in urgent need of updating. Within a week of this conference, COVID-19 was declared a global pandemic by the World Health Organization, and researchers began to explore genetic correlates of disease susceptibility. Should such correlates be identified, their application to treatment and prevention will raise especially sensitive privacy and practical concerns and the need for legal reforms will be become even more acute.