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A High-Tech Family Tree - New Services use DNA to Connect Relatives and Track Down Ancestors

Publication Date: 
January 14, 2008
Source: 
U.S. News & World Report
Author: 
Nancy Shute

This story covers the pros and cons of using of DNA-testing for genealogical research to establish one's family heritage, and reveals that now the "ante" is being upped by the use of "genetics as a social networking tool." Nancy Shute reports on the disputed accuracy of the testing technology, and the growing privacy concerns about use of the data. She quotes Professor Hank Greely:

It's essentially taking DNA-testing capabilities used by medical researchers and wedding them to a social networking website like MySpace. Whether such retail genetics will create meaningful new human connections or be a mere hobby remains to be seen. But uncertainty hasn't dampened the enthusiasm of genetic entrepreneurs...

...

"I'm convinced that in the next five to 10 years every educated person in the western world is going to have a profile like this," says Kári Stefánsson, CEO of deCODE genetics (deCODEme.com), an Icelandic company that, like 23andme, started selling gene scans to the public in November at about $1,000 a pop. The truly adventurous can sign up later this month for the Personal Genome Project, which is recruiting 100,000 volunteers to post their entire genomes along with their medical information on the Web, where it can be probed by medical researchers--or genetic voyeurs.

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The scans that enable this new form of social networking are far different from older genetic tests that pinpoint genes that cause diseases like cystic fibrosis. Instead, they look for small variations along a human being's 23 pairs of chromosomes that can be used to gauge a predisposition for health problems like heart disease or diabetes--or to trace ancestry.

Such wholesale disclosure of personal information could end up being dangerous for participants.

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Tests for ancestry compare a person's DNA with that of others, so the larger and more accurate a genetic genealogy database, the more precise its results. (The accuracy of genome-based disease risk tests also depends on database size, as well as the accuracy of research that links certain mutations to specific diseases.) The National Geographic Society's Genographic Project, which has been collecting DNA from volunteers since 2005, has about 225,000 samples of mitochondrial DNA, which traces maternal lineage. Africandna uses 58,000 samples of mitochondrial DNA; GeneTree uses 53,000 mitochondrial DNA test results from the Sorenson database; 23andme tests against 1,000 samples. Companies don't always detail the size of their databases in promotional literature, and many customers don't know to ask. Hank Greely, a law professor at Stanford University and an expert on ethics and bioscience, says the industry all too often has the trappings of science without the substance. "Scientists tell you the limitations; they tell you what you're getting and what you're not," he says. "These guys don't."

Even the most diligent researcher may not find answers in the genes given the current technology.

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Much has been made of the privacy risks posed by social networking sites like Facebook and MySpace. The new gene-testing sites raise the ante by encouraging customers to upload family trees, or even family medical histories. That information makes the data more useful for medical research—and also more potentially damning. A bill to protect people from discrimination by insurers and employers based on genetic information is stalled in Congress, and private DNA databases don't fall under the medical-records privacy provisions of state and federal law. There's nothing to keep a company from, say, selling the database as an asset if it goes bankrupt.