About that DNA Test You Got for the Holidays… Part 2: Privacy

silence means securityThe first post from this series examined the most common DNA test used for genealogy, the autosomal DNA test (atDNA), and discussed what the test can, and cannot do, along with a few words of caution about expectations.

This post continues the theme of questions a genealogist might ask a client regarding their desire to take a DNA test. Remember, genealogists want you to test. Genealogists also want informed consumers and educated clients. My typical first question – why do you want to test? or another way of looking at it, what are your goals for testing? – appeared in Part 1.

Second question: what are your privacy concerns?

We need to have a discussion about privacy. All genealogy research is deeply personal, and nothing more so than your genetic material. My aim is not to scare you. I want you to take a DNA test. I want you to be comfortable, and understand what it is, what it does, and what the future holds.

If you are considering DNA testing or even if you have already tested, please read the testing company’s Terms and Conditions. Carefully. Read the Informed Consent. Carefully. Read the Privacy Statement. Yes, carefully. It’s a lot of legalese, and it isn’t easy to digest, but please do it. Some companies value your privacy, some value your genetic data. Some will use it for their greater gains.[1]

Every testing company has slightly different Terms and Conditions, Informed Consent, and Privacy policies. The International Society of Genetic Genealogy Wiki maintains comparison chart[2] which can help answer some of these questions, but nothing, nothing, replaces reading the documentation. I know this feels like a homework assignment, but it’s one of those tasks that makes you a better student in the end.

As you read, take note of the following: where is your test processed? Who owns the genetic data – you or the company? What are the opt-in or opt-out options? Will your DNA be assessed for health or other traits? Is the testing company in contractual partnership with any other companies? Who owns the DNA testing company?

Another essential set of questions to ask yourself regarding DNA testing: have you prepared yourself for the possibility of unexpected results? Have you considered how you will approach family members, or strangers, when communicating about results, expected or not? Do you know if any other family members – siblings, parents, cousins – have tested?

Now that the legalese is out of the way, I want to address a few myths:

  • When I test, my DNA will be online for anyone to see. Your DNA test is only viewable at the company with which you choose to test. Depending on the company, it’s up to you to control and share the information with potential matches, only within the company. If you want to share more widely there are options that you control.[3]
  • If I test, law enforcement will be able to take my DNA. False, sometimes true, or, it depends. Here is what it depends upon: if you test and keep the results within the database of the testing company, law enforcement would be required to obtain a court order to access your DNA.[4] Using a company’s website is not what happened with the now-famous case of the Golden State Killer. A third-party testing site called GEDmatch was used. On GEDmatch, users take their raw DNA results and upload them to GEDmatch, and the results are compared to users who have done the same process. GEDmatch does not test DNA, it provides a public platform upon which people can openly share and look for matches across the different testing sites.
  • My sibling tested so I don’t need to – my DNA is already “out there.” Not really.[5] Some of your DNA might be “out there,” as full siblings have about 50% of their DNA in common. Even identical twins do not have 100 percent identical DNA.[6] Additionally, testing siblings, parents, cousins, etc. can be an important part of a DNA research plan. Before that can happen, have a conversation with your sibling (parent, cousin, etc.) about DNA testing and see if you can agree on privacy settings, where to test, who to test, expectations, and more.

Conclusions

Finally, the information in this post is based on my experience testing myself, family members and clients, as well as my study of DNA testing for genealogy. I do not receive advertising or other revenue from any of the DNA testing companies. I am not a lawyer and please do not consider this legal advice.

[1] “Opting out,” The Legal Genealogist, https://www.legalgenealogist.com/2015/07/26/opting-out/, accessed 2 Jan 2019.

[2] “Autosomal DNA testing comparison chart” Tim Janzen for ISOGG Wiki, https://isogg.org/wiki/Autosomal_DNA_testing_comparison_chart, accessed 2 Jan 2019

[3] Based on the information provided by testing companies and reported on at “Autosomal DNA testing comparison chart” Tim Janzen for ISOGG Wiki, https://isogg.org/wiki/Autosomal_DNA_testing_comparison_chart, as reviewed on 2 Jan 2019. Policies can change. This statement assumes appropriate security measures are in place to prevent data hacks.

[4] If you search the name of a DNA testing company plus the phrase “law enforcement,” for example, “FamilyTreeDNA+law enforcement,” you will be able to read each company’s policy on granting access.

[5] Time to brush up on recombination, which is the exchange of DNA segments between the two copies of a chromosome (maternally inherited and paternally inherited). The creation of each egg and sperm is an independent event, and the newly formed chromosome in the fertilized egg is a patchwork of contributions. Siblings inherit different portions. Basically, that’s why they are siblings and not clones! I know, I snuck in more science.

[6] “Identical Twins’ Genes are Not Identical.” Anne Casselman, Scientific American. https://www.scientificamerican.com/article/identical-twins-genes-are-not-identical/, accessed 8 Jan 2019.

Image: “Silence Means Security.” Record Group 44: Records of the Office of Government Reports, 1932 – 1947. Office for Emergency Management. Office of War Information. Domestic Operations Branch. Bureau of Special Services. 3/9/1943-9/15/1945 Series: World War II Posters, 1942 – 1945, War and Conflict Number 828.

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