Privacy and Progress

Policy Recommendations in Age of Personal Genomics.

As whole-genome sequencing has become engrained in research efforts at Duke as it is at other places and is slowly and surely finding its way into clinics, the Presidential Commission for the Study of Bioethical Issues issued its first self-initiated report on the matter in October under the heading Privacy and Progress in Whole-Genome Sequencing. The report and its dozen recommendations were intended to be forward-looking, for incorporation into future policy decisions and as guidance for the research community at large, said Nita Farahany, a professor in the Law School and the IGSP, who sits on the President’s Commission.

“If you wait until after whole-genome sequencing is widespread in databases before putting measures in place – at that point it could be too late.”
—Nita Farahany

“The report is meant to be prospective with the understanding that, once information is out, it’s really impossible to put back in,” she said. “If you wait until after whole-genome sequencing is widespread in databases before putting measures in place – at that point it could be too late.”

Commission Chair Amy Gutmann, President of the University of Pennsylvania, said that the goal was to strike a balance between the medical potential of whole-genome sequencing and the potential for risk related to issues of privacy and data access.

“The life-saving potential of genome sequencing depends on gathering genetic information from many thousands (perhaps millions) of individuals, most of whom will not directly benefit from the research,” Gutmann said in a press statement. “Those who are willing to share some of the most intimate information about themselves for the sake of medical progress should be assured appropriate confidentiality, for example, about any discovered genetic variations that link to increased likelihood of certain diseases, such as Alzheimer’s, diabetes, heart disease and schizophrenia. Without such assurance in place, individuals are less likely to voluntarily supply the data that have the potential to benefit us all with life-saving treatments for genetic diseases. Everyone stands to gain immensely from our society taking the necessary steps to protect privacy in order to facilitate progress in this era of whole genome sequencing.”

The recommendations encourage baseline protections on sequence data and against surreptitious genome sequencing. They are meant as a guide to ethical use, access and safeguards of genomic information.

Farahany says that, for her, the potential for misuse of the information is perhaps the biggest worry. “The Genetic Information Non-Discrimination Act goes only some of the way in affording protection, and it isn’t clear how strong GINA really is,” she said of the law prohibiting use of genetic information by employers and health insurance companies. There are still big questions at play, too, in terms of how people will identify with their own genetic information and how and whether they will want to protect or share it.

On these and related issues, there is still plenty left for the Commission to do in future reports, when it comes to informed consent, data sharing, individual rights, and more. “There is a lot of thinking to be done about how little we actually know about the genome today, how many decisions could be made based on limited knowledge now, and the potential for damage that might result,” Farahany said.


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