Announcing the Coalition for Genetic Data Protection

TheHill.com reports, “Genetic testing companies are forming a new coalition on best practices for handling DNA information and to promote the industry in Washington as lawmakers put more scrutiny on their privacy practices.” The new organization’s plan is to create reasonable voluntary guidelines for DNA privacy before lawmakers create their own less palatable laws that benefit no one.

As of January, more than 26 million consumers have added their DNA to the four leading commercial ancestry and health databases, believed to be Ancestry, 23andMe, MyHeritage, and Family Tree DNA, according to MIT Technology Review. However, the recent use by law enforcement use of the databases that is contrary to the stated purposes of these genealogy databases has created a lot of controversy.

Few people would ever object to identifying and apprehending violent criminals. However, the use of personally identifiable DNA information is a two-edge sword. Rogue law enforcement personnel, hackers, spies, and others also can use these DNA databases for illegal and unwanted purposes.

Senate Minority Leader Charles Schumer (D-N.Y.) called on the Federal Trade Commission in 2017 to ensure that the privacy policies of DNA test kits are transparent and fair to consumers.

“We don’t want to impede research, but we also don’t want to empower those looking to make a fast buck or an unfair judgment off your genetic information. We can find the right balance here, and we must,” Schumer said at the time.

You can read the full story in an article by Alex Gangitano at http://bit.ly/2X28l82.

2 Comments

I Hate to get all political on this but Mr. Schumer is about as political (and self-interested) as they come and, in my opinion, is only grabbing at a peice of this for political gain, not because “it’s the right thing to do”. It’s a way to say he is helping to protect “the citizens” but he does a lot of things that make for intersting headlines but either don’t do what they say they will or are little more than Feel Good legislation or pandering to various voter blocks. I wish this was otherwise but it’s politics.

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From a careful reading of the announcement, it appears to be a slick PR piece attempting to “spin” the formation of an industry lobbying organization whose main purpose is not an altruistic desire to protect the privacy rights of the members’ customers, but rather to stave off the possibility of GDPR-type consumer privacy protection legislation being enacted into law in the United States.

It’s pretty clear the members of the coalition are aware that legislators in the United States are beginning to take an interest in the DNA privacy issue, following customer complaints about some of these genetic testing companies’ recent activities, the Cambridge Analytica scandal at Facebook, and a series of massive data breaches at a series of other companies ranging from Yahoo to your local hospital, and that the founding members of this new coalition would prefer voluntary self-regulation instead, as a way of retaining complete control of the field in their own hands.

I will wait and see what they actually do before applauding. At least they’re paying lip service to the issue and that in itself is an improvement.

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