Featured Research

from universities, journals, and other organizations

Risks Of Sharing Personal Genetic Information Online Need More Study, Bioethicists Say

Date:
June 8, 2009
Source:
Stanford University Medical Center
Summary:
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 sharing genetic information online raises a host of ethical questions.

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 Sandra 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."


Story Source:

The above story is based on materials provided by Stanford University Medical Center. Note: Materials may be edited for content and length.


Cite This Page:

Stanford University Medical Center. "Risks Of Sharing Personal Genetic Information Online Need More Study, Bioethicists Say." ScienceDaily. ScienceDaily, 8 June 2009. <www.sciencedaily.com/releases/2009/06/090605075051.htm>.
Stanford University Medical Center. (2009, June 8). Risks Of Sharing Personal Genetic Information Online Need More Study, Bioethicists Say. ScienceDaily. Retrieved October 22, 2014 from www.sciencedaily.com/releases/2009/06/090605075051.htm
Stanford University Medical Center. "Risks Of Sharing Personal Genetic Information Online Need More Study, Bioethicists Say." ScienceDaily. www.sciencedaily.com/releases/2009/06/090605075051.htm (accessed October 22, 2014).

Share This



More Health & Medicine News

Wednesday, October 22, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

CDC Revamps Ebola Guidelines After Criticism

CDC Revamps Ebola Guidelines After Criticism

Newsy (Oct. 21, 2014) The Centers for Disease Control and Prevention have issued new protocols for healthcare workers interacting with Ebola patients. Video provided by Newsy
Powered by NewsLook.com
WHO: Ebola Vaccine Trials to Start a in January

WHO: Ebola Vaccine Trials to Start a in January

AP (Oct. 21, 2014) Tens of thousands of doses of experimental Ebola vaccines could be available for "real-world" testing in West Africa as soon as January as long as they are deemed safe in soon to start trials, the World Health Organization said Tuesday. (Oct. 21) Video provided by AP
Powered by NewsLook.com
First-Of-Its-Kind Treatment Gives Man Ability To Walk Again

First-Of-Its-Kind Treatment Gives Man Ability To Walk Again

Newsy (Oct. 21, 2014) A medical team has for the first time given a man the ability to walk again after transplanting cells from his brain onto his severed spinal cord. Video provided by Newsy
Powered by NewsLook.com
CDC Issues New Ebola Guidelines for Health Workers

CDC Issues New Ebola Guidelines for Health Workers

Reuters - US Online Video (Oct. 21, 2014) The U.S. Centers for Disease Control and Prevention has set up new guidelines for health workers taking care of patients infected with Ebola. Linda So reports. Video provided by Reuters
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:

Breaking News:

Strange & Offbeat Stories


Health & Medicine

Mind & Brain

Living & Well

In Other News

... from NewsDaily.com

Science News

Health News

Environment News

Technology News



Save/Print:
Share:

Free Subscriptions


Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

Get Social & Mobile


Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

Have Feedback?


Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
Mobile: iPhone Android Web
Follow: Facebook Twitter Google+
Subscribe: RSS Feeds Email Newsletters
Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins