Privacy policies, consent forms and terms and conditions
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(Redirected from Privacy)When taking a DNA test it is important to review the testing company's privacy policy, consent forms and terms and conditions. Some companies allow customers to choose the level of sharing.
Contents
Company policies
23andMe
- 23andMe Privacy Center
- 23andMe research participation and consent
- 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)
- 23andMe receives data security and privacy certifications (23andMe blog post)
- A conversation about privacy protections at 23andMe (23andMe blog post)
AncestryDNA
- 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
- Family Tree DNA Terms of Service
- 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.
GEDmatch
MyHeritage
Living DNA
YFull
DNA project privacy policies
Some DNA projects have written their own privacy policies which they ask potential participants to read prior to joining the project. See, for example, the Taylor Family Genes Privacy Policy.
Guidelines and standards
- The Genetic Genealogy Standards
- The Coalition for Genetic Data Protection have developed Privacy Best Practices for Consumer Genetic Testing Services in collaboration with the US-based Future of Privacy Forum. The initiative has been led by 23andMe, AncestryDNA and Helix. See also this blog post from the Future of Privacy Forum about the new guidelines.
- GDPR The European Union's General Data Protection Regulation
- The European Union Privacy Shield
Further reading
- Privacy, paranoia, patience and persistence by Kelly Wheaton.
- Selling genetic testing kits: read on by Elisa Jillson. Federal Trade Commission, 21 March 2019.
- 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.
Academic papers
- Clayton WE, Evans BJ, Hazel JW, Rothstein MA (2019) The law of genetic privacy: applications, implications, and limitations Journal of Law and the Biosciences, published online 14 May 2019.
- 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.