When it comes to DNA testing, Wall Street is 10 years ahead of Congress, and that's creating unease among consumers about the privacy of their genetic material, says the Sacramento Bee.
DNA testing companies have received billions of dollars in investment money, but lawmakers haven't done much to make sure they have strict oversight of this booming economic sector, according to the SacBee. In fact, since the Genetic Information Nondiscrimination Act was passed in 2008, lawmakers haven't done anything to update it. And while the law prevents companies from using DNA data to deny employment or health insurance coverage, it contains loopholes, the article adds.
And since familial DNA data contained in a genetic genealogy company's database was used to help catch the Golden State Killer a few weeks ago, privacy concerns have increased, the SacBee notes.
The article also adds that commercial DNA companies share their customers' genetic data with research partners. Peter Pitts, a former associate commissioner for the FDA, tells the SacBee that although that data is shared largely in aggregated, anonymous formats, the more of these partnerships there are, the greater the chance that someone's DNA identity could be hacked or compromised.
There is no current federal requirement that DNA testing companies inform customers about a security breach, but social media companies may soon face such a law, the SacBee says. In the Senate, Minority Leader Chuck Schumer (D-NY) has called on the Federal Trade Commission to investigate privacy policies of DNA testing companies, but the House and Senate haven't taken up any legislation on the matter, the article adds.
The EU is looking to tighten oversight with its new General Data Protection Regulation. In response, Ancestry.com updated its privacy statement, and US consumers may gain some additional protections through that European oversight, the SacBee says.