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Genetic Genealogical Privacy Standards

by Bradley Jansen January 18th, 2015 1:12 pm

The Genetic Genealogy Standards Committee recently came out with a document on Genetic Genealogy Standards that can be found here:

http://www.thegeneticgenealogist.com/wp-content/uploads/2015/01/Genetic-Genealogy-Standards.pdf

My take at first blush is that it's good that the genealogy community continues to update its standards with the times--and that it increasing recognizes the importance of privacy in those standards.

For example, there are several sections where the standards address areas of concern to this blog:

2. Testing With Consent. Genealogists only obtain DNA for testing after receiving consent, written or oral, from the tester. In the case of a deceased individual, consent can be obtained from a legal representative. In the case of a minor, consent can be given by a parent or legal guardian of the minor. However, genealogists do not obtain DNA from someone who refuses to undergo testing.1

3. 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.

6. 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.

7. 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. For example, DNA test results published on a DNA project website are publicly available.

8. Sharing Results. 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.

9. 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. Genealogists may confidentially share an individual’s DNA test results with an editor and/or peer-reviewer of a work of scholarship. Genealogists also disclose any professional relationship they have with a for-profit DNA testing company or service when lecturing or writing about genetic genealogy.

The committee explains their process, membership, review of comments, etc., all here
http://www.geneticgenealogystandards.com

It was pointed out that many of the members on the committee have ties to 23andMe and Ancestry.com which should have been disclosed properly.

The question then remains whether the community will be able to self-regulate.  We will have to come back to this subject soon.

One Response to “Genetic Genealogical Privacy Standards”

  1. avatar jonesge says:

    The persons at the bogus 'Genetic Genealogy Standards Committee' that authored these standards were not democratically selected nor are they unbiased representative of genealogists or genetic genealogists ... be they newbies or experienced genetic genealogists.

    Certainly, none of these authors have academic credentials or experience in Human Bioethics, Privacy Protections, etc. If they wanted 'their standards' to have some respectability and weight they should have had them vetted by Henry Greely who specializes in Bioethics at Stanford University. http://venturebeat.com/2013/12/31/genetics-prof-why-i-wont-waste-my-money-on-a-dna-test-in-2014/

    Many of the authors are bloggers AND/OR have a commercial interest in providing genetic genealogy services AND/OR putting on 'for a fee' seminars or conventions involving genetic genealogy. I think their next step is to sell some type of courses and certifications in this area. Cece Moore and her buddie, Angie Bush, already do this:http://www.forensicgenealogists.org/institute/courses/

    Did these authors (CeCe Moore and Angie Bush) fully disclose those commercial interests ... heck no!

    A case in point is CeCe Moore. I do know many of these authors received funds when they attend meetings sponsored by ancestry.com.

    I do know that many of these authors are '23andme Ambassadors' (ie lay mouthpieces) for 23andme and among other things receive free DNA kits.

    I do know that Kathleen Borges, senior person with ISOGG (basically 'her' own baby, should have first taken a shot at establishing 'industry standards' for DTC genetic genealogy companies such as FTDNA, 23andme, ancestry.com the National Geograpgic DNA program, etc. .... and she did not. Some journalists should explore that and ask why? Why are some genetic privacy standards being proposed for lay consumers and not for the big DTC companies such as 23andme, FTDNA, ancestry.com, NAtional Geographic, etc. This is why the FTC, Congress, and states need to set some regulations in this area.

    One of the standards authors, Blaine Bettinger, and I have debated on his blog about the need for increased privacy protections ... but I think if all was to him he he would even release US Census Data for 2010 versus the more prudent and privacy friendly 1940 US Census Data which is now available. He's the type of person who likes to pat himself on the back for releasing his genetic data and he thinks everybody under the sun should follow his open kimono view that there should be no genetic privacy ... I would say he is certainly biased in this area. He's one of the backers and speakers for the 'fee based' Institute for Genetic Genealogy. Did he disclose that as an author for these standards? Heck no! http://i4gg.org/

    This 'Standards Committee' talks about 'consent' in sharing genetic genealogy data, which could also have medical and health implications, where they should really examine the issue of 'informed consent' and the mind blowing and obtuse TOC (Terms of Conditions) foisted on consumers by companies such as 23andme and who are now reselling private genetic data to BIG PHARMA and companies such as Genentech, Pfizer, etc.

    Learn more at:
    http://www.scientificamerican.com/article/23andme-is-terrifying-but-not-for-reasons-fda/
    http://www.vox.com/2015/1/13/7536805/23andme-privacy

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