What you’re agreeing to
One of the most important aspects of DNA testing — and one that is given short shrift by way too many people — is the act of saying yes or no to the terms of service and research agreements asked of us.
Every single company that we might test with has terms of service, or terms of use, that govern our use of the service — and the service’s use of our DNA information. And we can’t test with those companies without agreeing to those terms. For 23andMe, the required terms are here;1 AncestryDNA, the required terms are here;2 for Family Tree DNA, the required terms are here;3 and for MyHeritage, the required terms are here.4
Beyond those mandatory terms, however, some companies like AncestryDNA have voluntary research agreements that they want us to sign, to agree to share our data with them for more things and broader uses — and often with more entities than just the testing company.
AncestryDNA has just updated its consent form for voluntary participation in research studies above and beyond the simple DNA testing and matching on its website,5 and anyone who’s coming on board today should carefully read this document and understand its provisions before agreeing to participate in this data collection program.
Keep in mind, the research study agreement is voluntary — you don’t have to agree to this before testing with AncestryDNA. Once you do agree to it, you can opt out later, but any data the company has already collected and shared with its research partners can’t be deleted from the research system.
So read it carefully, understand what it says, and agree to it only when you think it’s the right thing for you. And note: each person who tests has to opt in individually: nobody can opt in to this for a kit that’s not their own (or that of a person for whom they are parent or legal guardian).
The key provisions from the consent agreement are these:
2. What am I agreeing to if I consent?
By giving consent to participate in the Project, you agree that all information and biological samples that you share with us (as further described below) through your use of our websites, mobile applications, and products that exist now, or in the future (our “Services”) can be collected and used for research consistent with the Purpose until the Project is completed or ends (which may be many years from now).6
4. What data is used?
When you give consent, Researchers may use all data that you provide to us when you use our Services, including biological samples and any data derived from those samples (the “Data”). Data includes:
• DNA Samples: biological samples that you voluntarily provide to us now or in the future;
• Genetic Data: information derived from processing your DNA Sample through genomic, molecular, and computational analyses using various technologies, such as genotyping and whole or partial genome sequencing. Genetic Data is broader than just the results delivered to you when you use the AncestryDNA test and includes a range of DNA markers such as those associated with your health or other conditions;
• Self-Reported Health and Trait Data: information that you voluntarily share with us about the health, medical conditions, diseases, lifestyle or other traits of you and your family members, for example through the family health history tool or by answering questions on our Services;
• Family Tree Data: information that you voluntarily share with us about yourself and family members when creating family trees, such as genealogical data, pictures and birth dates. Family trees you mark as “private” are not used for the Project;
• Other Data about you: information that you share with us when you register, create a profile, or use your account, and information we obtain from other sources, such as publicly available genealogical data or demographic information; and
• Additional Data that may be shared in the future: other information you voluntarily share with us as we expand our Services, such as biosensor data recorded by mobile phones or activity trackers or health and wellness data collected from other devices. You are under no obligation to share additional data with us. However, if you do and you have given consent to participate in the Project, it may be used by the Researchers.7
AncestryDNA makes it clear that it will share this information with its collaboration partners: “Employees of AncestryDNA perform some of the research for the Project. We also work with researchers from other organizations and companies who share our Purpose. This might include academic institutions as well as non-profit and for-profit businesses or government agencies (“Collaborators”). These Collaborators may also work with other entities to conduct research associated with our Purpose (“Collaborator Partners”).”8 It provides a link to identify those partners here.
A primary consideration in whether to agree is the collection of data not only on ourselves — as the individuals choosing to test — but also with respect to family members whose information may be available.9
Remember: this research consent is voluntary. You need not agree to participate in the research in order to agree to test.
SOURCES
- “Terms of Service,” 23andMe.com (https://www.23andme.com/ : accessed 20 Mar 2017). ↩
- “AncestryDNA Terms and Conditions (United States)” and “AncestryDNA Terms and Conditions (Outside the United States),” Ancestry.com (https://www.ancestry.com/ : accessed 20 Mar 2017). ↩
- “Legal Issues – Privacy Policy, Terms of Service and Refunds,” Family Tree DNA (https://www.familytreedna.com/ : accessed 20 Mar 2017). ↩
- “MyHeritage – Terms and Conditions,” MyHeritage (https://www.myheritage.com/ : accessed 20 Mar 2017). ↩
- “AncestryDNA Informed Consent,” effective 8 Feb 2017, Ancestry.com (https://www.ancestry.com/ : accessed 20 Mar 2017). ↩
- “What am I agreeing to if I consent?,” Paragraph 2, AncestryDNA Informed Consent, Effective Date: February 8, 2017, Ancestry.com (https://www.ancestry.com/ : accessed 20 Mar 2017). ↩
- Ibid., “What data is used?,” Paragraph 4. ↩
- Ibid., “Who conducts the research?,” Paragraph 3. ↩
- See Judy G. Russell, “Opting out,” The Legal Genealogist, posted 26 July 2015 (https://www.legalgenealogist.com/blog : accessed 20 Mar 2017). ↩
Thank you so much for outlining this and remarking on it–I haven’t done anything with the email because I was trying to decide what to do. Now I know how I want to respond. As much as I want to contribute to DNA research, I don’t like the idea of some of the conditions I’d be agreeing to (too broad and long lasting), and because of that, I’m not going to agree to participate. Thank you again for pointing out the important aspects of this!
I just activated two kits today and started reading the terms for opting into the additional studies. I was not comfortable with what they were asking and did not agree to be included. The interesting thing was that the second kit I activated was for my mom. It let me make the decision for her kit too. That surprised me.
The shift-over to each individual having to activate and authorize individually is in progress. You just are behind the curve. 🙂
I came upon your blog post here, which was posted in the comments of a facebook post which had this link from another attorney:
“Ancestry.com takes DNA ownership rights from customers and their relatives” by Joel Winston
https://medium.com/@MedicalReport/ancestry-com-takes-dna-ownership-rights-from-customers-and-their-relatives-dbafeed02b9e
As curious as I was to further my genealogical research, I have thus far hesitated on submitting to a DNA test primarily due to cost issues. But THIS, coupled with your blog post, just makes it all the more concerning.
There are tradeoffs in everything we do. Go out in public and you leave DNA behind that the police can use if they choose to. So it’s really a matter of “you pays your money, you takes your chances” — and knowing what the risks are (and aren’t).
https://medium.com/@MedicalReport/ancestry-com-takes-dna-ownership-rights-from-customers-and-their-relatives-dbafeed02b9e
Judy is this true? can they use health data against us like that?
This article really overstates the risks, in my opinion. The federal law GINA (Genetic Information Nondiscrimination Act) provides substantial protection against genetic info being used for employment or health insurance decisions. It can be used for some other insurance, like long term disability coverage, but the insurer would have to show more than just that a family member carried the gene for a condition.
If I may, I want to take exception to this statement: And note: each person who tests has to opt in individually: nobody can opt in to this for a kit that’s not their own (or that of a person for whom they are parent or legal guardian).
As a parent, I have the obligation and authority to make legal decisions for my child(den) as long as they are under 18 or 21 in some states. Also, if I have POA over someone, its because they are not capable of making these decisions. So why would I NOT be able to opt out on behalf of a minor or incomplete individual?
You’re misreading it. What it says it you CAN opt in (or opt out) for any kit that’s your own OR that of your child OR that of a person as to whom you are legal guardian. In other words, you have control over any kit where it’s your kit or you have legal authority.