To some critics, consumer genomics calls to mind shades of eugenics and Big Brother-like tracking. According to 23andMe’s privacy statement, the company will only use customers’ genetic and phenotypic information to conduct “authorized scientific research and development.” The company offers patients affected by diseases such as sarcoma free membership in exchange for research study participation. 23andMe pregnancy community member LizaWasHere, who got tested to find out if she was at risk for Alzheimer’s, writes on the site: “[G]iving some corporate entity… a complete record of all of my currently available genetic information? Isn’t that a little bit ‘Gattaca’?”
Legality issues concerning such personal genetic tests are still murky, and not only vary from state to state, but even within the same state. In January 2010, Navigenics was licensed to perform health-related testing in New York, while the state’s health department defines 23andMe’s testing as requiring regulation and the permission of a doctor.
Scott R. Diehl, a geneticist at the University of Medicine and Dentistry of New Jersey, agrees that while genetics plays an important role in most diseases, the direct-to-consumer genetic testing model can be misleading. “What do these tests tell us? Very little,” Diehl says. “The ratio of scientific support to marketing hype is way out of whack. It’s very premature to market this to a public who doesn’t really have the knowledge to interpret the results from the kind of tests available today.”