23andMe – Has GINA Failed to Live Up to its Promise?
posted by Gaia Bernstein
23andMe is a genetic testing Internet site, which offers testing for over 100 genetic diseases and traits as well as ancestry testing. Many viewed 23andMe as the vehicle, which will bring genetic testing to the masses. It was promoted by “spit parties” in which attendees spat into a test tube to have their saliva analyzed to produce their genetic profile. Yet, recently the New York Times reported that two and half years after it commenced service 23andMe has not attained its expected popularity. The report tied 23andMe’s lack of popularity to the limited usefulness of genetic information – genetic science’s inability to predict with certainty that a person is going to get sick.
And true, genetic science is all about probabilities. A genetic test can rarely predict with a 100% certainty that a person will incur a disease. I doubt, however, that this limitation is holding 23andMe back. Unfortunately, people are not very good at understanding the statistical results of genetic testing. If anything, a woman who is told that she has a 60% of getting breast cancer is likely to dismiss the actual statistics and believe she is going to get sick. It is quite unlikely that people decided not to use 23andMe because of the low probabilities that accompany many genetic tests’ results.
Instead, fears of genetic discrimination likely played an important role in 23andMe’s failure to popularize genetic testing. People are afraid that if they undergo genetic testing and receive positive results they may lose their health insurance or their employment. As I have documented, these fears prevail although empirical data shows that genetic discrimination is in fact rare. Consequently, many individuals are inhibited by genetic discrimination concerns and choose not to undergo genetic testing.
Recently, the government enacted a relatively comprehensive federal law against genetic discrimination – the Genetic Information Nondiscrimination Act of 2008 (GINA). An important goal in legislating GINA was to alleviate fears of genetic discrimination. It was hoped that the enactment of a comprehensive federal law will provide a sense of protection and reduce genetic discrimination anxiety. The failure of 23andMe to attain widespread popularity indicates that at least so far GINA has not been as successful as was hoped in quieting fears and encouraging the use of genetic testing technology.
April 7, 2010 at 3:35 pm
Tags: discrimination, genetics, Privacy
Posted in: Health Law, Privacy, Uncategorized
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