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Access to results

A question arrived by email a couple of days ago that left The Legal Genealogist simply shaking her head.

“My cousin bought two DNA test kits and asked if I would like to use one,” the reader wrote. “I did so. However, when the tests came back, she would not share my results with me. I understand that she paid for the kit, but do I not have the right to obtain my results? Do I not legally own my DNA?”

Wow.

Even the fact that this reader has to ask the question just blows my mind.

DNA moleculeYes, dear reader. Yes, you own your DNA. No, you didn’t give it away when you agreed to test at the request of your cousin. And no, there is nothing — nothing — that is right about your cousin refusing to give you access to your results.

We now have working standards for genetic genealogists to consult when it comes to ethical questions like this. Officially announced last week, they’re the result of major efforts by a team of genetic genealogists, geneticists and others with substantial input from the genetic genealogy community.1

Those standards provide, in unequivocal terms, that “Genealogists believe that testers have an inalienable right to their own DNA test results and raw data, even if someone other than the tester purchased the DNA test.”2

There’s no wiggle room there. No room for “well, the results won’t mean anything to my cousin.” No room for “maybe my cousin won’t understand them.” No room even for “maybe my cousin doesn’t really want to know what her results show.”

Let me repeat the ethical standard:

“testers have an inalienable right to their own DNA test results and raw data, even if someone other than the tester purchased the DNA test.”

Now I can understand if the cousin isn’t sure how to go about giving her cousin access to the results.

Depending on what company the DNA test is done with, access can be easier or harder to arrange. AncestryDNA, for example, may require creation of a second account and perhaps even payment of a second access fee in order for a second person to have complete access to all DNA results from the cousin’s test without violating Ancestry’s terms of use about sharing accounts.

At Family Tree DNA, by contrast, it couldn’t be easier: each and every test kit has an individual kit number and an individual password, and giving a cousin access to the cousin’s own test results is simply a matter of giving the cousin that log-in information.

And I can understand if the cousin who paid for the test is concerned that perhaps somehow her own access to the results she paid for could be lost. That can happen if, for example, the cousin who was tested chooses to change the password or to delete a test.

If that happened with a test I’d paid for, I’d hate it. And I’d certainly try to convince my cousin to give me access again or to allow me to arrange to have the test results restored if possible.

But the bottom line here is, the DNA results belong to the cousin whose DNA is being tested, not to the person who paid for the test.

Yes, the cousin who paid for the test may have to work out how to give the cousin whose DNA was tested access to the results.

But there is no question whatsoever — none in any way, shape or form — about the question of whether she should give her cousin access.


SOURCES

  1. See Judy G. Russell, “DNA: good news, bad news,” The Legal Genealogist, posted 11 Jan 2015 (http://www.legalgenealogist.com/blog : accessed 18 Jan 2015).
  2. Paragraph 3, Standards for Obtaining, Using, and Sharing Genetic Genealogy Test Results, “Genetic Genealogy Standards,” GeneticGenealogyStandards.com (http://www.geneticgenealogystandards.com/ : accessed 18 Jan 2015).
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