Privacy policies, consent forms and terms and conditions
From ISOGG Wiki
- 23andMe Privacy Center
- 23andMe individual data sharing consent
- 23andMe research consent document
- 23andMe biobanking consent
- 23andMe transparency report
- 23andMe guide for law enforcement
- 23andMe and privacy - your data and law enforcement (23andMe blog post)
- AncestryDNA terms and conditions (United States)
- AncestryDNA terms and conditions (outside the United States
- Ancestry privacy principles
- AncestryDNA EU Safe Harbor Privacy Shield Update
- AncestryDNA privacy statement
- Ancestry transparency reports
- AncestryDNA informed consent for the optional Ancestry Human Diversity Project
- Can AncestryDNA.com take ownership of your DNA data? Fact Check from Snopes. Published 22 May 2017. Updated 23 May 2017.
Family Tree DNA
- Family Tree DNA Terms - includes links to all the FTDNA policies
- [https://www.familytreedna.com/legal/terms-of-service Family Tree DNA Terms of Service
- [https://www.familytreedna.com/legal/privacy-statement Family Tree DNA Privacy Statement
- Family Tree DNA Consent to Participate in Matching
- Family Tree DNA Law Enforcement Guide
- Family Tree DNA Transparency Report
- Family Tree DNA Group Project Participation Informed Consent
- Family Tree DNA Group Project Administrator Terms and Policies
Gene by Gene (FTDNA's parent company) complies with the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks as set forth by the U.S. Department of Commerce. Gene by Gene has also committed to refer unresolved privacy complaints under the EU-US and Swiss-U.S. Privacy Shield Principles to an independent dispute resolution mechanism, the BBB EU Privacy Shield, Gene by Gene has also nominated their own Ombudsman for privacy issues: .
Customers can choose whether or not to sign the [Consent to Participate in Matching (previously known as the release form). However, it should be noted that if a customer does not sign the release form they will not be able to view their matches in the database. The customer can adjust the privacy to choose whether or not to display their surname and their DNA results on the results page of the projects they have joined.
DNA project privacy policies
Guidelines and standards
- The Genetic Genealogy Standards
- Privacy best practices for consumer genetic testing services Guidelines produced by the US-based Future of Privacy Forum. The full guidelines can be read here.
- GDPR The European Union's General Data Protection Regulation
- The European Union Privacy Shield
- Privacy, paranoia, patience and persistence by Kelly Wheaton.
- Correcting the record on privacy by Leah Larkin, The DNA Geek, 10 November 2018
- Do DNA tests put your personal information at risk? by Judy Russell and Sunny Jane Morton. Family Tree Magazine (US), 29 September 2018.
- DNA tests: consider the privacy implications by Leslie Fair, Federal Trade Commission, 12 December 2017.
- Direct-to-consumer genetic testing and privacy Advice from the Office of the Privacy Commissioner Canada]. Last updated December 2017
- What happens to your genetic data when you take a commercial DNA ancestry test? CitiGen, 12 July 2017.
- People are going to court over dead family members’ Facebook pages – it’s time for post-mortem privacy by Edina Harbina. The Conversation, 2 June 2017.
- Respecting the privacy of DNA test takers Board for Certification of Genealogists, 8 October 2015.
- How privacy law affects medical and scientific research by John Conley, Genomics Law Report, 1 September 2015.
- Privacy, the police and DNA by Judy G. Russell, The Legal Genealogist blog, 8 February 2015.
- DNA privacy issues by Emily Aulicino, Genealem's Genetic Genealogy. 20 September 2008.
- Laestadius LI, Rich JR MPH and Auer PL (2017). All your data (effectively) belong to us: data practices among direct-to-consumer genetic testing firms. Genetics in Medicine 19, 513–520.
- Genomic privacy and direct-to-consumer genetics: big consumer genetic data - what's in that contract? by Andelka Phillips. Security and Privacy Workshops (SPW) 2015 IEEE, Issue Date: 21-22 May 2015.
- Think before you click: ordering a genetic test online by Andelka Phillips. The Sci Tech Lawyer 2015 Vol 11, No 2.