The Bioethics Commission has released the fourth episode, “Privacy and Progress,” in its new podcast series Ethically Sound. The series is dedicated to bringing the Bioethics Commission’s body of work to a broad audience. The Bioethics Commission, established in 2009 by President Barack Obama, has produced 10 reports, each of which focuses on key ethical considerations surrounding a particular topic. Today’s episode focuses on the Commission’s report Privacy and Progress in Whole Genome Sequencing.
Privacy and Progress addresses complex privacy concerns related to a powerful and newly accessible technology. Whole genome sequencing has evolved from an ambitious scientific aspiration to a readily available technique with tremendous potential to advance clinical care and medical research. The extent of highly personal information collected through whole genome sequencing raised concerns about protecting the privacy of individuals whose genomes were sequenced. In addressing the ethical dilemmas surrounding whole genome sequencing, the Commission considered the potential benefits of whole genome sequencing, as well as concerns related to privacy protection. Throughout its public deliberations, the Commission considered a variety of perspectives on the issue. In its report, the Commission presented a series of recommendations regarding access to and use of genetic information, including a recommendation that federal and state governments ensure a consistent set of privacy protections for genetic information.
The podcast opens with a narrative from Retta Beery, a mother and patient advocate who shared the story of her children with the Commission. Ms. Beery’s twin children, Noah and Alexis, suffered from a debilitating condition for the majority of their childhood.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.