The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Ethically Sound Episode 4: Privacy and Progress

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. Initially diagnosed with cerebral palsy, Ms. Beery conducted her own research and discovered that her children needed to be treated with supplements of the amino acid levodopa (L-Dopa). However, even with the supplements, Ms. Beery’s daughter, Alexis, continued to suffer from a periodic inability to breathe, which sometimes required trips to the emergency department. When Noah and Alexis were 14, Ms. Beery had their genomes sequenced, which led to the discovery of a genetic mutation. Only then were physicians able to determine their precise diagnosis and appropriate treatment plan. After this discovery, Ms. Beery said “Alexis was back to running and living a full life. Whole genome sequencing, literally, saved her life.”

The podcast also includes an interview with Commission member Dr. Anita Allen, the Henry R. Silverman Professor of Law and Professor of Philosophy at the University of Pennsylvania. Hillary Wicai Viers, former Communications Director with the Bioethics Commission staff, conducted the interview. Dr. Allen discussed the impact that the report has had since its released, and how the diverse backgrounds of the Bioethics Commission members facilitated deliberations about the tension between the right to privacy and the immense potential progress that could result from whole genome sequencing. Regarding the Commission’s diverse backgrounds, Dr. Allen said, “This wide variety of backgrounds meant that some of the questions asked were not just the obvious ones about how data can be protected, but also deep, deep understandings and different understandings of why data should be protected.”

Episode 4 is now on our website, as well as on our SoundCloud, YouTube and iTunes pages. In addition to this episode, listeners can access the first three episodes “Safeguarding Children,”Ethics and Ebola,” and “Anticipate and Communicate.” Listeners can follow the podcast using the hashtag #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for the fifth episode in our series, “Gray Matters,” which will be available on October 10, 2016. We welcome comments and feedback at info@bioethics.gov.

Share this article

Leave a Reply

Read the comment policy before posting your comment.

About blog.Bioethics.gov

This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

Learn more about the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues.