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

Wrapping up Genomics and Privacy

The Presidential Commission for the Study of Bioethical Issues wrapped up its public deliberations on genomics and privacy this morning, ending a more than year long examination of the emergence of whole genome sequencing as an addition to clinical care and genetic research. The Commission spent several hours publicly discussing the set of recommendations it intends to deliver to President Obama.

“The Commission’s recommendations,” said Dr. Amy Gutmann, Commission Chair and President of the University of Pennsylvania, “clump into two big categories, one is consent to whole genome sequencing and to the possible findings and how they will be treated, and the other is oversight.”

One question that was explored in depth was, as Commission member John Arras, Ph.D., of the University of Virginia, put it, “the impending merger between clinical practice and research,” and how that would impact informed consent.

Commission member Raju Kucherlapati, Ph.D., from the Harvard Medical School Department of Genetics, said, “Genetic testing for research purposes involves extensive informed consent forms signed by individuals, while the process of consent for clinical testing is not as extensive a process.”

Members discussed at length the informed consent issue of “opting in” versus “opting out.” “Opting in” is giving patients the option of joining a research study.  “Opting out” means informing patients that they are assumed to be participating in a research study unless they choose not to.

“We want the public good to be served,” Gutmann asserted at several points, with Commission recommendations helping the science move forward.  She suggested the Commission also strongly recommend that the federal government should be encouraged to facilitate access to the broadest number of people possible.

The Commission also discussed expanding the amount of deliberation it requires to make a solid set of recommendations surrounding the issue of incidental findings. That is, when a researcher or clinician finds a result other than what they set out to discover and how to handle that information—if a geneticist looking for the genetic marker for one disease also notices the genetic marker for another.

The Commission is expected to deliver a report to President Obama in the fall.

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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

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