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PGen Study to Survey 1K Subjects to Investigate Impact of Personal Genomics Data


Originally published March 6.

Researchers conducting a prospective analysis of the psychological and behavioral impact of personal genomics data announced this week that they are ready to send out surveys to study participants.

The Personal Genomics Study, or PGen, is being led by principal investigators Robert Green of Brigham and Women's Hospital and J. Scott Roberts of the University of Michigan School of Public Health.

In PGen, which has funding from the National Human Genome Research Institute (PGx Reporter 6/9/2010), Green and Roberts will be surveying customers who have received results from gene scans conducted by 23andMe and Pathway Genomics to investigate how this information has impacted them. The project, which was previously called Genomes2People, aims to survey 1,000 participants — half will be Pathway customers and the other half will be 23andMe customers.

"Researchers will then … compare survey responses to the genetic results, providing unique insight into the risks and benefits of personal genomic services," according Green and Roberts.

23andMe markets its gene scans online directly to customers and doesn't require a doctor's prescription. Meanwhile, while Pathway Genomics previously launched its genetic testing model under a similar DTC model, the company now markets its testing services largely through doctors. The change came after Pathway received a letter from the US Food and Drug Administration questioning why the company's tests had not been cleared through the agency (PGx Reporter 5/19/2010).

Through the surveys, the researchers will probe consumers' motivations, expectations, and attitudes for getting genetically tested, as well as gauge their responses to learning their genetic disease risk, carrier status, and drug response results. The researchers are hoping that the results of the study will shed light on the type of person who gets personal genomic testing and why; what effect this data has on consumers' psychology, perception and understanding of risk; and what they do with this information.

“The goal is to produce results that can be translated into recommendations to guide policy and practice in this rapidly emerging area,” Green said in a statement.

According to Roberts, there has been a lot of speculation but a dearth of clinical data on the potential risks and benefits of personal genomics data on consumers. "We hope that our study will help to bridge this evidence gap," Roberts said in a statement.

Previous studies, such as the Multiplex Initiative by the National Human Genome Research Institute and a behavioral study by the Scripps Translational Research Institute, have reported that genetic data has a limited impact on people's behavior and that a minority of people share their test reports with genetic counselors or their doctors. However, these surveys also found those who shared their test results with their doctors also appear to be the most motivated to make changes to their lifestyle (PGx Reporter 7/29/09, 11/12/11).