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“We want to understand how consumers interpret and act on personal genetic information, and we want to know who to share it with,” Lee said. To answer these questions, Crawley and Lee plan to use an approach called “social network analysis”, with deep roots in the field of anthropology.For now, there are no laws that govern the exchange of genetic information online. But, as genetic testing becomes cheaper and more widespread, more people have access to their DNA code, and experts fear that consumers can share genetic information without realizing the potential implications for themselves and their families.

In most cases, the mail client in a sample of DNA for sequencing, and obtain both raw data and interpretation of their genetic profile. Some companies, including 23andMe, also allow customers to create a public profile and share their genetic information through a website sponsored by the company of social networking.

In collaboration with the assistant professor of pediatrics and bioethics Lavera Crawley, MD, MPH, Lee studied the potential implications for the exchange of genetic information online. To understand the effects of sharing, the researchers say we need more data on who is to provide information and how they are used. Their recommendations will be published in a special double issue of American Journal of Bioethics 5 June

Collage on a similar genetic background sounds relatively harmless. But according to bioethicists from Stanford University School of Medicine, online sharing of genetic information raises a number of ethical issues.

Because the genetic information applies to more than one person, questions of confidentiality and consent is complicated. “For example,” Lee said, “if we receive information about the risk of breast cancer and to share with others, you may also be sharing information on the risks of breast cancer in your daughter, even though he never consented to have this information shared. ”

“Social Network Analysis is a system of mapping how people relate to one another and how relationships are formed around some of the institutions and ideas,” said Lee, whose work was funded by a grant from the National Human Genome Research Institute . “In this case, we want to see how people build relationships based on their genetic information.”

“There are things there that we can not play today, but we will be able to play in five years,” said Russ Altman, MD, PhD, professor of genetics at Stanford University and scientific adviser to 23andMe, which was not involved in the work Lee and Crawley. This means that an unsuspecting consumer may share data that does not mean anything today, Altman said, but then reveals a high risk of serious illness.

“The genetic information is unique in that it is not only relevant for individuals who receive the information, but also for their families, their children and even grandchildren,” said Sandra Soo-Jin Lee, Ph.D., Senior Center at the School of Biomedical Ethics.

As the cost comes down to DNA sequencing, genetic testing industry is booming. Lee estimated that about 100 companies around the world now offer some form of direct-to-consumer genetic testing. Two of the largest companies, 23andMe and Navigenics are based in Silicon Valley.

“The results depend on the number and type of markers used and the robustness of their data banks,” Lee said. “It ‘important to have more control over this information to ensure that s consumers understand what their results really mean.”