Respecting the Privacy of DNA Test Takers

Respecting the Privacy of DNA Test Takers

2018-05-15T09:51:45+00:00October 8th, 2015|Education|Comments Off on Respecting the Privacy of DNA Test Takers

By Judy Kellar Fox, CG®

We, all of us who take a genetic test or sponsor or manage a test for someone else, have a responsibility to do what we can to protect our privacy and that of our testers. We must familiarize ourselves with what genetic genealogy tests entail, the uses to which test results may be put, and the testing companies’ privacy safeguards. We must obtain permission from our testers for the testing and for the use of test results. We must respect testers’ restrictions on usage and publication of their results. Several respected groups have set standards that guide us.

The Board for Certification of Genealogists (BCG) Code of Ethics addresses the issue.

  • We agree to keep confidential personal or genealogical information unless we have written consent.[1] DNA test results are treated like all genealogical information.
  • We agree not to publish or circulate research or reports to which others have a proprietary right unless we have written consent.[2] This includes reports from DNA testing companies. The reports belong to the testers.

BCG has published genealogy standards that also apply to DNA test results:

  • Standard 22: “Genealogists ethically, lawfully, prudently, and respectfully use others’ information and products, whether the material is digitized, oral, published, unpublished, written, or in any other form.”[3]
  • Standard 34: “Genealogists may use agents . . . to find, obtain, and provide information potentially relevant to a research question.” Genetic testing companies fall under the category of agents.[4]

The National Genealogical Society (NGS) “Standards for Sharing Information with Others” expand on these guidelines.[5]

In January 2015 the Genetic Genealogy Standards Committee of scientists and genealogists published guidelines based on BCG and NGS standards that specifically address DNA testing for genealogy. Nine standards, excerpted here, directly or indirectly address the issue of privacy.[6] We are both “the tester” and the “genealogists.”

  • “Testing With Consent. Genealogists only obtain DNA for testing after receiving consent, written or oral, from the tester. . . .
  • “Raw Data. 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.
  • “DNA Storage. Genealogists are aware of the DNA storage options offered by testing companies, and consider the implications of storing versus not storing DNA samples for future testing. . . .
  • “Terms of Service. Genealogists review and understand the terms and conditions to which the tester consents when purchasing a DNA test. [See the links to testing companies’ terms of service below.]
  • “Privacy. Genealogists only test with companies that respect and protect the privacy of testers. However, genealogists understand that complete anonymity of DNA tests results can never be guaranteed.
  • “Access by Third Parties. Genealogists understand that once DNA test results are made publicly available, they can be freely accessed, copied, and analyzed by a third party without permission. . . .
  • “Sharing Results. Genealogists respect all limitations on reviewing and sharing DNA test results imposed at the request of the tester. . . .
  • “Scholarship. 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. . . .
  • “Health Information. Genealogists understand that DNA tests may have medical implications.”

There’s no doubt that following these standards requires extra effort on our part. We need to inform ourselves. We need to communicate with our testers and educate them. We need to explain their rights and the potential limitations on their privacy. We need to solicit their consent before the tests are taken and before we share any results.

In scrupulously applying standards of privacy to all the information we gather, we become more trustworthy genealogists.

Testing Companies’ Terms of Service

23andMe: “Terms of Service.” 23andMe. https://www.23andme.com/about/tos/.

AncestryDNA: “AncestryDNA Terms and Conditions.” AncestryDNA. https://dna.ancestry.com/legal/termsAndConditions. Revised 30 September 2014.

FamilyTreeDNA: “Legal Issues—Privacy Policy, Terms of Service and Refunds.” FamilyTreeDNA. https://www.familytreedna.com/privacy-policy.aspx.

Further reading about Genetic Genealogy Standards

Bettinger, Blaine T., PhD, JD. “Genetic Genealogy Standards.” Association of Professional Genealogists Quarterly (June 2015): 105–7.

Russell, Judy, JD, CG, CGL. “The Ethics of DNA Testing.” OnBoard: Newsletter of the Board for Certification of Genealogists 21 (January 2015): 1–2, 7.

Wayne, Debbie Parker, CG, CGL. “Genetic Genealogy Standards.” NGS Magazine 41 (April–June 2015): 58–61.

The author gratefully acknowledges input from Blaine Bettinger, PhD, JD; Laura Murphy DeGrazia, CG; Stefani Evans, CG; Alison Hare, CG; Judy G. Russell, CG, CGL; and Debbie Parker Wayne, CG, CGL.

 


[1] Genealogy Standards (Nashville, Tenn.: Ancestry.com, 2014), 46.

[2] Ibid., 47–48.

[3] Ibid., 16.

[4] Ibid., 21.

[5] “Standards for Sharing Information with Others,” National Genealogical Society (http://www.ngsgenealogy.org/cs/standards_for_sharing_information : accessed 7 October 2015).

[6] The Genetic Genealogy Standards Committee, Genetic Genealogy Standards  (http://www.geneticgenealogystandards.com/ : accessed 7 October 2015), Standards 2–10.

CG, Certified Genealogist, CGL, and Certified Genealogical Lecturer, are service marks of the Board for Certification of Genealogists, used under license by Board-certified genealogists after periodic competency evaluation, and the board name is registered in the US Patent & Trademark Office.