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Leaders Urge Education, Regulation in Personal Genomics

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Some 100 people descended on the National Press Club in Washington, DC, this June to listen to a discussion on the nascent personal genomics industry. The panel, part of a seminar series organized by the Genetics and Public Policy Center at Johns Hopkins University, included Harvard's George Church, Colleen McBride from NHGRI, Stanford law professor Hank Greely, and Bob Green, a neurologist from Boston University.

Though the panelists differed in the specifics of their opinions on the field, the prevailing sentiment among them — and one that seemed shared by the audience — was that there's a dire need for education initiatives as more and more companies target their services directly to consumers. Greely said his main concerns about these kinds of companies (such as 23andMe or DecodeMe) include: lack of warnings to potential customers about privacy issues and the possibility of finding out unwanted information; the actual predictive power of the genetic data compared to its perceived power; lack of readily available genetic counseling; and the fact that some companies are willing to test children, who have traditionally been off-limits for genetic tests since they can't legally consent for themselves.

McBride presented preliminary data from an NHGRI study aimed at better understanding how patients respond to getting genetic risk results from a panel of tests, such as for lung or skin cancer. The Multiplex Initiative has so far delivered results to nearly 200 patients, all of them healthy adults. The study will help determine whether people change their behavior based on receiving this information.

While data on how consumers respond to getting full panels of results remain scarce, research on how people handle single-test results is further along. Green is working on the third part of a study that delivers Alzheimer's disease risk assessment based on APOE testing to people who have at least one relative with the disease, and follows them over time to gauge their response to genetic counseling and other approaches. Green said he was encouraged to find that patients did very well, most showing clear understanding of their results and what risk meant for them. He noted that patients at increased risk were more likely to start taking non-medical supplements, a trend he found worrisome.

Meanwhile, Church provided an update on his Personal Genome Project, which recently received IRB approval to scale up to 100,000 participants. The project is also expanding globally, and several groups outside the US are already working toward their own IRB approvals.

Greely said the field is moving so fast that policy is far behind. "We're in for an interesting 10 years or so while governments try to regulate based on what the science was five years before," he said.

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