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There were a couple of articles last year regarding DNA testing companies such as 23andMe, selling data.

See example articles :

  1. DNA-testing companies like 23andMe sell your genetic data to drugmakers and other Silicon Valley startups

    The data is being shared with private companies such as P&G Beauty:

    which have shared the data of millions of anonymized customers with private companies

    as well as Helix which shares data via user consent. The article states:

    A big reason many genetics-testing companies share data with third parties is for research.

  2. DNA Testing Companies are Data Collection Farms for Big Pharma

    They’re just another data-driven company like Google and Facebook that sell their users out to the highest bidder. The business model is the same across the board: collect as much user data as possible – which will be sold to third parties – while doing your best to hide the fact that you are abusing the user’s privacy.

Is DNA data collected by DNA testing companies being collected for commercial purposes? i.e. being provided to private companies which leads to product development

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    Why would you have any reason to believe that this is NOT true? – Daniel R Hicks Feb 22 at 12:53
  • @DanielRHicks in the US it would be potentially illegal per The HIPAA Privacy Rule and other laws – James Jenkins Feb 22 at 13:25
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    @JamesJenkins According to the articles, the companies have made the argument that since it is not "medical information" as defined by HIPAA, those laws don't apply. Also, HIPAA only covers it if it is not "anonymous". All they have do to clear HIPAA is sell the raw data. The drug companies can re-identify it if they can, but HIPAA isn't really a factor here (even if it should be). – Is Begot Feb 22 at 13:42
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This isn't exactly a secret.

23&me talk about it on their blog.

They seem pretty proud of it.

One of the options when you send your sample to them is a box for whether you consent to your data being used in research.

https://blog.23andme.com/news/a-note-on-23andmes-new-collaboration-with-gsk/

We have also built a significant research team that has published over 100 scientific papers. In 2015, we launched 23andMe Therapeutics to develop novel treatments and cures based on genetic insights from the consented 23andMe community.

Today, I am thrilled to announce that we are launching a collaboration with GlaxoSmithKline (GSK) to accelerate our ability to make those novel treatments and cures a reality.

I hear regularly from customers that they want to be part of a solution that is improving health care. We all have some disease or health issue that we care about. 23andMe has created a research platform to enable customers to actively participate in research — to not wait for solutions to appear, but for people to come together and make discoveries happen. By working with GSK, we believe we will accelerate the development of breakthroughs. Our genetic research — powered by millions of customers who have agreed to contribute — combined with GSK’s expertise in drug discovery and development, gives us the best chance for success.

https://www.23andme.com/pd/

We are excited to join The Michael J. Fox Foundation for Parkinson's Research (MJFF) as a partner on Fox Insight, an online study designed to collect data from Parkinson's patients to inform research and drug development. MJFF is the largest non-profit funder of Parkinson's research and shares our goal of revolutionizing Parkinson's research through genetics.

When you join Fox Insight, you may be eligible to participate in the Fox Insight Genetic Sub-study powered by 23andMe. You could make a difference.

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