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