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Ethicists Call For Research on DTC Genomics Social Networking

NEW YORK (GenomeWeb News) – Ethicists are debating the research, social, and ethical implications of mixing social networking with direct-to-consumer genomics.

In a paper appearing online today, Stanford University Center for Biomedical Ethics researchers Sandra Lee and LaVera Crawley discussed a range of issues related to the convergence of direct-to-consumer genomics and social networking. The duo also proposed using social network analysis to better understand the social and ethical consequences of DTC genomics.

"We want to understand how consumers interpret and act upon personal genetic information, and we want to know who they share it with," Lee said in a statement. "Social network analysis is a system of mapping how individuals are related to each other and how they form connections around certain institutions or ideas."

The paper is one of two target articles on DTC genomic testing in the June issue of The American Journal of Bioethics. The articles are accompanied by almost a dozen and a half "peer commentary" papers by researchers and ethicists from around the world.

To date, much of the debate over direct-to-consumer genomic testing has centered on their clinical relevance and appropriate regulation. But Lee and Crawley argued that researchers and regulators also need to consider the ramifications of integrating social networking into the way personal genetic information is relayed and shared between DTC consumers.

For instance, they noted that 23andMe is offering its customers the opportunity to share and compare their genetic health and/or ancestry profiles.

"These new social formations — the offspring of the convergence of the development of online tools and social networking platforms and paradigm shift towards 'openness' — demand greater scrutiny in considering the ethical and social implications of DTC [personal genetic information] for the evolving landscape of genomic research," the authors wrote.

Lee and Crawley suggested individuals may not understand what they are comparing when they share their DTC genomic information with one another online. They also highlighted potential risks that could be associated with making one's genomic information available to others.

"Although individual consumers must give permission to share [personal genetic information], individuals with little experience with genetic testing may not fully comprehend at the time of approval the implications of the broad panoply of results that may be shared with them," the authors wrote. "Without a process analogous to informed consent, there is no mechanism by which to ensure that individuals, at a minimum, consider what the effects of sharing might be."

Beyond genetic data sharing between DTC genomics customers, the article also touched on related issues involving the use of consumer data for research purposes. With 23andMe introducing their 23andWe initiative last year to recruit customers into research projects, Lee and Crawley explained, the line between DTC consumer and research subject is increasingly being blurred. The company is also collaborating with the Michael J. Fox Foundation for Parkinson's Research and the Parkinson's Institute.

Although the authors noted that DTC genomics companies' genetic databases "are critical assets for DTC genomic companies and their stated goal of improving genomic medicine bench to bedside," they also pointed out that this genetic data could be accessed by academic and other research collaborators and may easily be shared with others through social networking sites in the future. And, they say, confidentiality concerns are just one of many issues that need to be considered with respect to such research.

"In assessing how the putative democratization of science may impact on the process of collaborative research and the significance of new relationships, there is a need for in-depth study of both individual and organizational social networks around [personal genetic information]," Lee and Crawley argued. "Only through empirical research of this shifting terrain can we assess the critical ethical and social questions that [personal genetic information] begs for the future of genomic research."

For their part, the authors propose using social network analyses to not only evaluate how individuals communicate personal genetic information to one another, but also how this information influences various social relationships and the role of health professionals in helping consumers interpret their personal genetic information.

In an editorial appearing in the same issue of The American Journal of Bioethics, four 23andMe employees, including co-founders Anne Wojcicki and Linda Avey, outlined the company's perspectives on everything from the clinical relevance and actionability of DTC genetic test information to data sharing and privacy.

"At 23andMe, we welcome opportunities to discuss ways in which we can balance the need to educate and protect customers with our intertwined missions: giving people access to their own personal genetic information, and creating a novel, participant-driven research model," Wojcicki, Avey, and their co-authors wrote.

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