Tuesday, November 28, 2017

Seventeen years and millions tested ought to count for something Sen. Schumer

Here we go again. A new day. A new person. Another federal entity being called upon to save us from ourselves. 

Sen. Chuck Schumer of New York announced at a press conference on the Sunday before Cyber Monday 2017, plans to investigate the terms of service agreements of ancestral DNA testing companies. In Senator calls for more scrutiny of home DNA test industry, Schumer is quoted, 
"...some of their terms-of-service agreements weren't clear on just what companies could do with your genetic information."
The senator is asking the Federal Trade Commission to:
"...take a serious look at this relatively new kind of service and ensure that these companies can have clear, fair privacy policies."

The direct-to-consumer ancestral DNA testing industry started in the year 2000 so can hardly be called "relatively new". 

With respect to the DNA companies' "clear, fair privacy policies", there's always room for improvement. That said, the DNA companies named in the article have worked very hard and invested quite a bit to insure "clear, fair privacy policies."  AncestryDNA is a prime example. Their privacy policy is clear, concise, and updated on a regular basis with past versions available. AncestryDNA even provides a version for US citizens as well as international.

Launched in 2007, 23andMe has also heavily invested in their Terms of Service (ToS) and Privacy Policy. Both the ToS and privacy policy even contain a glossary. How much more clearer can they be? Schumer additionally said, 
"Here's what many consumers don't realize, that their sensitive information can end up in the hands of unknown third-party companies," he said. "There are no prohibitions, and many companies say that they can still sell your information to other companies."
23andMe explicitly states they DO NOT provide any information to a third party without express permission under "Consent to the Transfer of your Personal Information" under number 2. on their privacy policy:
"We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent."
Much of the fault in consumers not realizing what they're consenting to, lies not in ignorance or illiteracy, but in laziness. A 2016 episode on NPR shared that 98% of those who participated in the study missed a clause agreeing to give up their first-born child. Consumers need to be proactive and educate themselves by reading the ToS and privacy policies.Towards the end of the article, Schumer again states the DTC DNA companies are
"...brand new, and they need safeguards."
Ancestry has been in the DNA market since 2006. 23andMe since 2007 and MyHeritage is a reseller of a test from a company founded in 2000. Again, not "brand new". 

Consumers have a right to their genetic information just as much as we have the right to medical information as allowed under HIPAA law. Let Sen. Schumer know. Help educate him. Contact.

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