You are more than a data point. The Opt Out is here to help you take your privacy back.
IN THE LAST DECADE, direct-to-consumer genetic tests like those from Ancestry.com and 23andMe have become ubiquitous in the US. These services cater to Americans looking for distant relatives, a missing piece of their history, or insight into their health. But if you can’t wait to swab your cheeks or spit into a plastic tube (or have done so already), you should know the privacy risks involved in putting your entire genome in the mail.
Maybe your information becomes a financial asset in a merger, or the service’s terms and conditions change without notice, or the company stores your biological sample in perpetuity. All of these scenarios might allow companies to handle and analyze your data in a way you haven’t consented to. This could be especially perilous if upcoming technologies and methods permit others to use your genome in currently unknown ways, creating problems we cannot even imagine.
The law is lacking
There’s a big difference between genetic testing in a medical setting (at places like a hospital, clinic, or doctor’s office) and at home. The first kind is protected by two powerful laws: the Health Insurance Portability and Accountability Act (HIPAA), which says Americans have to explicitly consent before their health data can be shared with third parties, and the Genetic Information Nondiscrimination Act (GINA), which protects against labor and insurance discrimination based on genetic data.
Unfortunately, these two pieces of legislation do not apply to direct-to-consumer genetic testing. The only government agency that has jurisdiction over this market is the Federal Trade Commission, which defends consumers against fraud and unfair practices and can penalize companies whenever they fail to fulfill promises to their customers. This entity does not, however, provide specific protections to consumers when it comes to the…
Read the full article here