The Senate voted Thursday to approve anti-discrimination legislation to protect consumers from losing their jobs or health insurance based on genetic testing showing predispositions to serious diseases. The legislation is widely supported in order to free people to find out what their personal genome can tell them about their risks for cancer, obesity, heart disease, Alzheimer's, mental illness and many other conditions.
The bill provides a rare slice of clarity in the rapidly evolving, largely unregulated and highly commercialized world of personal gene testing. Elsewhere, genetic testing is plagued by issues regarding accuracy, adequate counseling of consumers and questions about the value of knowing what's in store for you regarding your health. Such issues were chronicled in detail recently in L.A. Times Health stories by Anna Gosline and Melissa Healy.
The latest controversy involves whether a doctor should have to write an order for consumers to obtain personal gene information through online services, such as 23andMe and Navigenics. Last week, New York state's Department of Health sent letters to several online gene-testing firms saying the companies cannot perform the mail-order gene tests on New York residents without a permit. State officials say the companies are offering medical tests, which subjects them to medical testing regulations. That would require the companies to acquire a permit to offer genetic tests, and the tests would have to be ordered by a doctor. Right now, consumers can order information on their genome with a do-it-yourself saliva test kit and without involving a doctor.
In an article on Forbes.com, some gene-testing companies protested the requirement, saying they are providing educational information to consumers, not medical information. If other states decide to take this route, it will surely put a crimp in personal gene testing. And if doctors are added into the loop for obtaining personal genetic information, it makes legislation guaranteeing privacy and prohibiting discrimination all the more vital.
-- Shari Roan
Photo: DNA slide at Johns Hopkins University, by Rob Carr / Associated Press