Presidential Panel Wrestles with Ethical Issues Linked to Clinical Use of Whole Genome Sequencing

The U.S. Presidential Commission for the Study of Bioethical Issues is grappling with many of the ethical issues arising from the falling price—and resulting potential for increased use—of whole genome sequencing in clinical care. The aim is to find the balance between researchers’ use of such data and the privacy of individuals whose genomes are under study.

Addressing the committee on February 2, speakers offered varied perspectives on key questions: How is genetic information collected and stored? Who will interpret this genetic data? Is it ethical to allow healthcare providers to interpret the data without a health systems infrastructure to help them interpret it? What will be the privacy protections for patients?

The commission plans to discuss its recommendations publicly and come to consensus views at its August meeting. Recommendations are to be finalized in a report to President Barack Obama set to be completed this fall.

“The Norman Rockwell model or Marcus Welby model that your doctor knows and remembers everything and can do it all right is hopelessly inadequate for this era of data-intensive healthcare,” said Daniel R...