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Ask first

So last week the question posed to The Legal Genealogist was whether the cousin who had paid for a DNA test should share the results with the cousin who took the DNA test.

blurThe no-brainer answer is yes.1 Just because you paid for a test doesn’t mean you can close off the results to the cousin whose DNA was tested.

As noted last week, we now have working standards for genetic genealogists to consult when it comes to ethical questions like this. 2 And the applicable ethical standard here is 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.”3

This week the question that came in was about the flip side of this issue: whether the cousin who paid for the test should share the results far and wide — with the name of the tested cousin, usually, still attached.

That answer should also be a no-brainer.

Unless you have consent, the answer is no.

No, no, no.

And in case that isn’t clear enough:

No.

The ethical standards are as clear on this as they were on the first question: “Genealogists respect all limitations on reviewing and sharing DNA test results imposed at the request of the tester. For example, genealogists do not share or otherwise reveal DNA test results (beyond the tools offered by the testing company) or other personal information (name, address, or email) without the written or oral consent of the tester.”4

Even when it comes to writing about DNA results for scholarly research, the standards require that:

When lecturing or writing about genetic genealogy, genealogists respect the privacy of others. Genealogists privatize or redact the names of living genetic matches from presentations unless the genetic matches have given prior permission or made their results publicly available. Genealogists share DNA test results of living individuals in a work of scholarship only if the tester has given permission or has previously made those results publicly available.5

What this means, put in simple terms, is that we should not take a screen capture of DNA results from a testing company and post it in a blog post or on Facebook with the names or pictures of our matches still attached unless we’ve asked those matches specifically if we can post it.

And this isn’t a new idea, springing out of genetic genealogy alone. This is the long-time ethical standard of the genealogical community. This concept of protecting the privacy of living people can be found for example in:

• The Code of Ethics of the Board for Certification of Genealogists, which requires that board-certified genealogists pledge that: “I will keep confidential any personal or genealogical information given to me, unless I receive written consent to the contrary.”6

• The Standards for Sharing Information with Others of the National Genealogical Society, which advises us to “respect the restrictions on sharing information that arise from the rights of another … as a living private person; … inform people who have provided information about their families as to the ways it may be used, observing any conditions they impose and respecting any reservations they may express regarding the use of particular items… (and) require some evidence of consent before assuming that living people are agreeable to further sharing of information about themselves.”7

• The Code of Ethics of the International Association of Jewish Genealogical Societies, which notes that “If data is acquired that seems to contain the potential for harming the interests of other people, great caution should be applied to the treatment of any such data and wide consultation may be appropriate as to how such data is used. … Generally, a request from an individual that certain information about themselves or close relatives be kept private should be respected.”8

So as responsible genetic genealogists we don’t just take a screen shot and post it. We take a second, using the tools in every photo program out there — including my favorite free program Irfanview — and blur out the names or photos of our matches as you can see in the image above of my own AncestryDNA results.

Or we do something really unusual.

We ask first.


SOURCES

  1. Judy G. Russell, “Whose DNA it is anyway?,” The Legal Genealogist, posted 18 Jan 2015 (http://www.legalgenealogist.com/blog : accessed 24 Jan 2015).
  2. See ibid., “DNA: good news, bad news,” The Legal Genealogist, posted 11 Jan 2015.
  3. 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).
  4. Ibid., paragraph 8.
  5. Ibid., paragraph 9.
  6. Code of Ethics and Conduct,” Board for Certification of Genealogists (http://bcgcertification.org/ : accessed 24 Jan 2015).
  7. Standards for Sharing Information with Others, 2000, PDF, National Genealogical Society (http://www.ngsgenealogy.org/ : accessed 24 Jan 2015).
  8. IAJGS Ethics for Jewish Genealogists,” International Association of Jewish Genealogical Societies (http://www.iajgs.org/ : accessed 24 Jan 2015).
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