Is 23andme and Ancestry selling your DNA information?

+11 votes
447 views

This link says yes: https://dna-explained.com/2015/12/30/23andme-ancestry-and-selling-your-dna-information/

Excerpt follows:

Are you aware that when you purchase a DNA kit for genealogy testing through either 23andMe or Ancestry that you are literally giving these companies carte blanche to your DNA, the rights to your DNA information, including for medical utilization meaning sales to Big Pharm, and there is absolutely no opt-out, meaning they can in essence do anything they want with your anonymized data?

Both companies also have a higher research participation level that you can choose to participate in, or opt out of, that grants them permission to sell or otherwise utilize your non-anonymized data, meaning your identity is attached to that information.

However, opting out of his higher level DOES NOT stop the company from utilizing, sharing or selling your anonymized DNA and data.  Anonymized data means your identity and what they consider identifying information has been removed.

Many people think that if you opt-out, your DNA and data is never shared or sold, but according to 23andMe and Ancestry’s own documentation, that’s not true. Opt-out is not truly opt-out.  It’s only opting out of them sharing your non-anonymized data – meaning just the higher level of participation only.  They still share your anonymized data in aggregated fashion.

in The Tree House by Anonymous Farrar G2G6 Mach 1 (14.8k points)

2 Answers

+3 votes
 
Best answer

It appears from the privacy statement of 23andMe that, by "aggregate data", they mean statistical data (or at least that is what they want consumers to apprehend). Hence saying 30% of the population has genetic variant Z. Or perhaps genotypes P & Q are shared by 87% of individuals. So it probably doesn't contain sequences of SNPs, as reasonably speaking, for collections of 20 or so SNPs, you're starting to get at "identifying information", as it's unique to a particular individual. 

For example, Aggregate Information may include a statement that "30% of our female users share a particular genetic trait," without providing any data or testing results specific to any individual user. We may provide such Aggregate Information in commercial arrangements with our business partners. In contrast, individual-level Genetic Information could reveal whether a specific user has a particular genetic trait, or all of the Genetic Information about that user. 23andMe will ask for your consent to share individual-level Genetic Information or Self-Reported Information with any third-party, other than our service providers as necessary for us to provide the Services to you.

As for Ancestry, it's privacy statement does mention 3rd parties, however it appears to be related to data processing and storage, which are certainly outsourced:

iii)) Third party service providers: Under the protection of appropriate agreements, we may disclose personal information to third party service providers we use to perform various tasks for us, including for the purposes of data storage, consolidation, retrieval, analysis, or other processing, as well as effective management of customer information and to help us communicate with you. For example, we use third parties to process payments from you and to help manage the AncestryDNA Website and relationships with you. To perform the DNA Tests or store samples we may use approved specialized laboratories or storage facilities. These third-parties are only given access to that information needed to perform their services, and are prohibited from using it for other purposes. These third parties may include affiliated and unaffiliated service providers in in the United States, Europe and in other jurisdictions.

While privacy is a real concern, it seems that for the most part, insofar as they are able, both companies have addressed the concerns. There are of course legal constraints, and these need to be considered, such as the case of government investigators using these DNA databases to match suspects' genetic information, and then compelling the companies to turn over personally identifying information, as was reported in 2015 by the Electronic Frontier Foundation and others. It's going to be a larger issue in the future.  

 

by anonymous G2G6 Pilot (127k points)
selected by Rosemary Jones
+2 votes
So what is the problem with anonymized data?  Isn't that like responding to a poll?  And AFAIK nobody is required to join Ancestry.com.  I guess it's good to know what they do to make decisions, but it's nothing I wouldn't have expected them to do.
by Dave Dardinger G2G6 Pilot (406k points)
You apparently are   experience and well informed , most people who sign up for DNA testing do not have the breadth and depth of your knowledge, experience and apparent lack of concern and fear as to the use of their DNA.

And as you are aware, very few, if anyone, ever reads the entire user agreement, for anything, or if they did the average person, lacking legal training, doesn't or could not understand the terms and conditions.

Practically every one who uses a computer has to agree to terms and conditions before using any software. Do you read them? I don't know anyone that does. Certainly don't really understand everything I read, when I did.

People who submit to DNA testing, should be aware of what they are signing up for.

Myself, I'm not too worried, given that I have tested at 23andme and am a Project Admin at FTDNA.  But people do have a right to know, and to question.

People should also be aware of GINA, the Genetic Information Non Discrimation Act,

https://www.genome.gov/10002328/genetic-discrimination-fact-sheet/ it does not, however, preclude health insurers from underwriting the policy (Individual policies, not group), and charging premiums as appropriate.

Nor does it apply to Life Insurers, Long Term Care Insurance, Disability Insurance.

People should have all the information before they sign up for anything.

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