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

Commission Member Anita Allen Presents “Privacy and Progress” at Cold Spring Harbor Laboratory Meeting

Presidential Commission for the Study of Bioethical Issues Member Anita Allen, J.D., Ph.D., presented the Commission’s most recent report, Privacy and Progress in Whole Genome Sequencing, to a key audience of clinicians and scientists whose work involves the very technology the report addresses.

Allen’s presentation was part of an Ethics Panel at the Cold Spring Harbor Laboratories Personal Genomes and Medical Genomics Meeting, held November 14 – 17 in Cold Spring Harbor, N.Y.  Founded in 1890, the Cold Spring Harbor Laboratory is a world leader in molecular biology and genetics research and has been home to eight Nobel laureates over the course of its history.

Allen’s four-person panel presented and discussed ethical considerations in whole genome and single and multiple gene sequencing.  Approximately 100 genomicists, geneticists, graduate students and post-docs affiliated with Cold Spring Harbor and other institutions around the world attended the discussion.

In addition to reviewing the key findings and recommendations of the report, Allen fielded questions and comments from attendees.  Many of the clinicians raised questions about diagnosis, informed consent and the delivery of whole genome sequence results in the context of patient care, while many of the researchers raised questions about incidental findings and barriers to genomic data collection. 

“Everyone seemed to want specific guidance on ethical matters,” noted Allen after the meeting.

The entire panel fielded questions about the use of historical genetic samples, granting consent by opting-out versus opting-in to contributing samples to genetic research, whether biological materials are considered property, and genetic exceptionalism – the notion that genetic information should be considered differently from other types of medical information. 

The meeting convened members of the field to present and explore the biological foundations, broader applications, and current state of personal genomics.  The program included presentations by scientists and physicians, and a keynote speech by Retta Beery, whose personal story of how genome sequencing led to a correct diagnosis and treatment for her children’s rare genetic disorder was included in the Commission’s Privacy and Progress report.

The meeting’s ethics panel, on which Allen participated, also included Dr. Arthur Beaudet of the Baylor College of Medicine, Dr. Jacques Beckmann of the University of Lausanne in Switzerland, and Dr. Gholson Lyon of the Cold Spring Harbor Laboratory, who shared a story of his work in Privacy and Progress.

In addition to her work for the Commission, Allen is the Henry R. Silverman Professor of Law and Professor of Philosophy at the University of Pennsylvania.

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