Risks Of Sharing Personal Genetic Information Online Need More Study, Stanford B

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Risks Of Sharing Personal Genetic Information Online Need More Study, Stanford

Bioethicists Say

http://www.medicalnewstoday.com/articles/152785.php

With just $399 and a bit of saliva in a cup, consumers can learn about their

genetic risk for diseases from breast cancer to diabetes. Now, thanks to social

networking sites set up by personal genomics companies, they can also share that

information with family, friends and even strangers on the Internet.

Bonding over a similar genetic background sounds relatively harmless. But

according to bioethicists from the Stanford University School of Medicine,

sharing genetic information online raises a host of ethical questions.

" Genetic information is unique in that it's not only relevant for the

individuals who receive the information, but also for their family members,

their children and even their children's children, " said Soo-Jin Lee,

PhD, senior research scholar at the school's Center for Biomedical Ethics.

Because genetic information applies to more than one person, issues of privacy

and consent become complicated. " For example, " Lee said, " if you receive

information on your breast cancer risk and share it with others, you might also

be sharing information about your daughter's risk for breast cancer - even

though she never consented to have that information shared. "

In cooperation with assistant professor of pediatrics and bioethicist LaVera

Crawley, MD, MPH, Lee has been studying the potential implications of exchanging

genetic information online. To fully understand the effects of sharing, the

researchers say we need more data on who's giving out information and how it's

being used. Their recommendations will be published in a special double-issue of

the American Journal of Bioethics on June 5.

" 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. To answer

these questions, Lee and Crawley plan to use an approach called " social network

analysis " with deep roots in the field of anthropology.

" 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, "

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 forge connections

based on their genetic information. "

As the cost of DNA sequencing drops, the genetic testing industry is expanding

rapidly. Lee estimates that nearly 100 companies around the world now provide

some form of direct-to-consumer genetic testing. Two of the largest companies,

23andMe and Navigenics, are based in Silicon Valley.

In most cases, customers mail in a DNA sample for sequencing, and then get both

raw data and an interpretation of their genetic profile. A few companies,

including 23andMe, also let customers create a public profile and share their

genetic data through a company-sponsored social networking site.

For now, there aren't any laws that govern the exchange of genetic information

online. But as genetic analysis becomes cheaper and more widespread, more and

more people will have access to their DNA code - and experts fear that consumers

may share genetic data without realizing the potential implications for

themselves and their families.

" There's stuff in there that we can't interpret today, but we will be able to

interpret in five years, " said Russ Altman, MD, PhD, professor of genetics at

Stanford and a scientific advisor for 23andMe, who was not involved in Lee and

Crawley's work. That means an unsuspecting consumer could share data that's

meaningless today, Altman said, but later reveals an elevated risk for a serious

disease.

" Personally, I'm not anxious to share my genome, " Altman said. " The information

affects my daughters, my son and my parents, who might not want to learn about

their genetic profile. If I share my information with strangers, there's a

higher risk that it will get back to my family. "

In addition, both consumers and their health providers may have trouble

interpreting data provided by personal genetics companies, Lee said. Estimates

of disease risk are often based on small, unreplicated studies in the biomedical

literature, but consumers may not understand how preliminary this data is.

" Results depend on the number and type of markers that are used, as well as how

robust their databases are, " Lee said. " It's important for there to be a greater

oversight of this information to ensure that consumers understand what their

results actually mean. "