New York State Regulators Want Consumers to Stay Ignorant of Their Genetics
As a happy purchaser of direct-to-consumer genetic testing, I am very glad that I don't have New York State health bureaucrats telling me what I can and, more importantly, what I cannot find out about my genes.
As GenomeWeb News reports:
Despite claims by direct-to-consumer genomics companies that they should not be regulated as clinical laboratories because they provide educational information about genetic risk, the New York State Department of Health is regulating such facilities as laboratories, according to a state health official. …
Currently, New York State law requires that all laboratories testing human specimens must first obtain a permit in order to operate in the state. The law also states that labs can only order tests at the request of a state-licensed physician, who is not employed or financially compensated by the company that will perform the test….
This has implications for 23andMe's highly publicized "spit party" last year, in which the company collected saliva samples from celebrities in order to raise awareness of its genetic-screening service.
"We have told 23andMe repeatedly that without a NY license, any samples collected in the state have to be destroyed. We've been assured that this has been done," Willey said. "Of course, we've not confirmed that the samples have been incinerated."
This is just the latest manifestation of medical paternalism. The idea is that people just can't handle the truth (whatever that is). But history shows that people learn to use new technologies and new information through a process of trial-and-error. Slowing that process down just makes it more socially painful. The good news is that genomic testing will be available offshore if it's outlawed here.
Reason has been opposing this kind of medical paternalism over genetic testing for a long time.
Disclosure: I am a customer of 23andMe's genomic testing. The type of information that New York State bureaucrats would deny me is that I have genetic variants that decrease my risk of rheumatoid arthritis and increase my risk of celiac disease. I personally found the information very educational. In a future article I plan to reveal all of my known genetic flaws.