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Something to plan for

So the question came up more than once yesterday when The Legal Genealogist and the Chicago Genealogical Society together explored the uses of DNA in genealogical research at the Arlington Heights Memorial Library:

Who owns your DNA sample when you submit it to a testing company?

There’s really no doubt about the answer: you do. For example, Family Tree DNA says flatly, “DNA samples belong to customers.”1

In fact, you can’t — that is, you’re not supposed to — even submit a sample for testing unless it’s yours or that of someone for whom you have legal authority to act.

All four places where I’ve currently tested — 23andMe, AncestryDNA, Family Tree DNA and National Geographic’s Geno 2.0 project — require that the sample be submitted by the person whose sample it is or by someone with the legal authority to consent for that person (such as a parent or guardian on behalf of a child). For example:

• Family Tree DNA explains, repeatedly, in a number of contexts, that “Even if you paid for the test of a friend or relative, they need to be the one to consent … we ask that you practice ethical testing and kit conservatorship…”2

• 23andMe’s terms of service require that “You are guaranteeing that any sample you provide is your saliva; if you are agreeing to these TOS on behalf of a person for whom you have legal authorization, you are confirming that the sample provided will be the sample of that person.”3

• At AncestryDNA, “you represent that any sample you provide is either your DNA or the DNA of a person for whom you are a legal guardian or have obtained legal authorization to provide their DNA to AncestryDNA.”4

So ownership isn’t really the question, is it? The real question is, who can access our data if something happens to us? Or, more importantly for folks like me who’ve paid for dozens of cousins to test, do I still have permission — do I still have the right to continue to access a cousin’s data if something happens to that cousin? Can I order an additional test done?

One company makes it really easy to have an answer to that question, and I wish the others would follow suit.

You see, Family Tree DNA lets each of us choose and specifically identify a beneficiary for our kits. By simply filling in a few bits of information, and getting one piece of paper properly notarized, I can set things up so that someone I choose can be:

the sole beneficiary to (my test kit), my Stored DNA, DNA Results, and Family Tree DNA account, to do all things required. For that purpose my beneficiary may execute and deliver, or amend, correct, replace all documents, forms, consents or release, tests and upgrades, and may do all lawful acts which may continue my involvement with FamilyTreeDNA.com.5

Here’s how to do it. First, log in to your FTDNA test results. Look on the page for this link to Manage Personal Information:

who.owns1

Click on that link, and you’ll go to this page with these tabs, and note the one highlighted at the right:

who.owns2

Click on the tab for Beneficiary Information and this is what you’ll see:

who.owns3

And when you fill out those boxes and click save, it will offer you the chance — highlighted here — to go to a printable form, already filled out with the information you entered in the boxes.

who.owns4

That form needs to be notarized. I keep a copy with my will. I’ve sent a copy to the person I’ve chosen to be executor of my estate.

And, I’ll tell you, I’ve done one thing more, since neither 23andMe nor AncestryDNA offers the same easy system.

I’ve taken the Family Tree DNA form, and changed the language, replacing all the references to Family Tree DNA with each of the other company names, and all the references to my kit number and the like with appropriate information about my test results from the other companies. And I’ve given my beneficiary the legal authority to continue to access my results and accounts at those other companies if something happens to me.

Now I can’t guarantee the other companies will honor that authority, because they haven’t been as forward-thinking as Family Tree DNA is about this issue. But it’s the best I can do until and unless the other companies do set something up on their own.

Because if something does happen to me, it may well be more important to my extended family to have my genetic legacy as any other legacy I might possibly leave them.

So I’m doing everything I can, with Family Tree DNA’s help, to ensure that that legacy does get passed on.


SOURCES

  1. “The Family Tree DNA Learning Center BETA: Sample Access and Transfer Policy,” Family Tree DNA (http://www.familytreedna.com/ : accessed 13 Sep 2014).
  2. Ibid., “I paid for a relative’s test, may I contribute their results to science?.”
  3. Terms of Service: User Representations,” 23andMe (https://www.23andme.com/ : accessed 13 Sep 2014).
  4. US Terms and Conditions – Revision as of March 20, 2013: DNA Testing,” AncestryDNA (http://dna.ancestry.com : accessed 13 Sep 2014).
  5. FTDNA beneficiary designation printed form, Family Tree DNA (http://www.familytreedna.com/ : accessed 13 Sep 2014).
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