The blog of the Presidential Commission for the Study of Bioethical Issues

Executive Director Lisa M. Lee Presents “Privacy and Progress” at Personalized Medicine Conference

Presidential Commission for the Study of Bioethical Issues Executive Director Lisa M. Lee, Ph.D., M.S., presented the Commission’s recent report, Privacy and Progress in Whole Genome Sequencing at the 8th Annual Personalized Medicine Conference at the Harvard Medical School in Boston.

The conference, held November 28-29, is organized by Harvard Medical School, Harvard Business School, and Partners HealthCare Center for Personalized Genetic Medicine – a research organization that aims to integrate genetics and genomics into patient care.  Each year, the meeting convenes hundreds of presenters and attendees from government, academia and the private sector to discuss recent developments in personalized medicine and its broader applications in policy and health outcomes. 

Lee discussed the findings and recommendations of the Privacy and Progress report during an ethics session titled Ethical Aspects of Whole Genome Sequencing.  The report, which deals with the ethical considerations of privacy and whole genome sequencing, concludes that while whole genome sequencing serves to advance personalized medicine and public health, ethical guidelines are needed for its use in clinical and research contexts to respect and secure individual interests in privacy. In short, to ensure the kind of progress whole genome sequencing promises, privacy must be protected.

Robert Green, M.D., M.P.H., an Associate Professor of Medicine at Harvard Medical School and Brigham and Women’s Hospital and the Associate Director for Research at Partners HealthCare Center for Personalized Genetic Medicine, also presented during the session.

Both Lee and Green fielded questions that concerned the ownership of whole genome sequence data and the handling of data in medical records.  Lee and Green noted that ethical conversations on these topics may be more concerned with transparency, access and use of data rather than ownership.

Lee also discussed whether genomic data security should be considered a public good that is shared across the biotechnology industry, or if it can be variable across companies in order to maintain a competitive edge.  Lee reiterated the Commission’s view that public trust depends on the maintenance of data security and its view that security best practices be shared across industry to maximize public trust.

“Many of the participants had read the Commission’s Privacy and Progress report,” noted Lee after the conference. “It was heartening to hear the robust ethics discussion at this intensely scientific meeting.”

Commission Member Raju Kucherlapati, Ph.D. chaired the meeting’s organizing committee and delivered opening and closing remarks, as well as a presentation, during the conference.

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