New Coalition for Genetic Data Protection formed
A new coalition of genetic testing companies has been formed focusing on advocacy for genetic data protection.
As first reported this past week by The Hill, “Genetic testing companies are forming a new coalition on best practices for handling DNA information and to promote the industry in Washington as lawmakers put more scrutiny on their privacy practices.”1
According to the report, the focus of the Coalition for Genetic Data Protection will be to actively promote genetic data privacy including, as needed, by lobbying the United States Congress. The coalition’s executive director is a principal of the Washington, D.C. lobbying firm Mehlman Castagnetti Rosen & Thomas.2
The coalition has a new website which explains on its homepage that “Genetic testing companies 23andMe, Ancestry and Helix have come together to form the Coalition for Genetic Data Protection, which serves to provide a unified and proactive voice to advance policies that ensure the privacy and security of an individual’s genetic data and enable responsible innovation.”3
The mission statement of the group is set out on the homepage and footer of every page: “The Coalition for Genetic Data Protection is committed to the strict adherence of critical standards and principles, as well as working with the lawmakers to see these standards codified into any future data privacy law.”4
And, the website notes, “Genetic testing empowers consumers to proactively understand and manage their health, wellness and ethnicity or origins in unprecedented ways – and millions of consumers have taken advantage of these opportunities. At the same time, genetic data provides unprecedented opportunities for the research community to better understand the role genetics play in our health and well-being as a human population. While we recognize the significant opportunities genetic testing and research present, we also support and advocate for reasonable and uniform privacy regulation that will ensure the responsible and ethical handling of every person’s genetic data.”5
The website then goes on to explain:
The Coalition for Genetic Data Protection is formed around three core principles:
Best Practices for All Participating Companies
Current and future companies who make up the Coalition will promote and must adhere to the principles encapsulated in the “Privacy Best Practices for Consumer Genetic Testing Services,” a whitepaper published in July 2018 by the Future of Privacy Forum in partnership with leading consumer genetic and personal genomic testing companies that establishes standards for consumer-generated genetic data by requiring (page numbers reflect where each of the below points can be read about in greater detail in the white paper):
• Detailed transparency on how genetic data is collected, used, shared and retained, including a summary of key privacy protections posted publicly and made easily accessible to consumers (Page 3);
• Separate express consent for transfer of genetic data to third parties and for incompatible secondary uses (Page 4);
• Educational resources about the basics, risks, benefits and limitations of genetic testing (Page 10);
• Access, correction, and deletion rights (Page 7);
• Valid legal process for the disclosure of genetic data to law enforcement and transparency reporting (Page 8);
• A ban on sharing genetic data with third parties (such as employers, insurance companies, educational institutions and government agencies) without consent or as required by law (Page 7);
• Restrictions on marketing based on genetic data (Page 6); and
• Strong data security protections and privacy by design (Page 9), among others.
Effective Advocacy
The Coalition will work toward a unified federal policy agenda focused on issues impacting genetic data privacy.
Enhanced Transparency
The Coalition will partner with key government and policy stakeholders regarding privacy and security policies for the protection of genetic data.
The Coalition for Genetic Data Protection is committed to the strict adherence of these critical standards and principles, as well as working with the United States Congress to see these standards codified into any future data privacy law.6
No comment from The Legal Genealogist is needed, except one.
Note which companies are participating, and which are not… and whether others accept the whitepaper privacy principles and join in.
Cite/link to this post: Judy G. Russell, “Advocating genetic data privacy,” The Legal Genealogist (https://www.legalgenealogist.com/blog : posted 30 June 2019).
SOURCES
- Alex Gangitano, “DNA testing companies launch new privacy coalition,” The Hill, posted 25 June 2019 (https://thehill.com/ : accessed 30 June 2019). ↩
- Ibid. ↩
- “Who we are,” Coalition for Genetic Data Protection (https://geneticdataprotection.com/ : accessed 30 June 2019). ↩
- Ibid. ↩
- Ibid., “About CGDP.” ↩
- Ibid., “Coalition for Genetic Data Protection (https://geneticdataprotection.com/ : accessed 30 June 2019). ↩
From a careful reading of the announcement, it appears to be a slick PR piece attempting to “spin” the formation of an industry lobbying organization whose main purpose is not an altruistic desire to protect the privacy rights of the members’ customers, but rather to stave off the possibility of GDPR-type consumer privacy protection legislation being enacted into law in the United States.
It’s pretty clear the members of the coalition are aware that legislators in the United States are beginning to take an interest in the DNA privacy issue, following customer complaints about some of these genetic testing companies’ recent activities, the Cambridge Analytica scandal at Facebook, and a series of massive data breaches at a series of other companies ranging from Yahoo to your local hospital, and that the members would prefer voluntary self-regulation instead, as a way of retaining complete control of the field in their own hands.
I will wait and see what they actually do before applauding. At least they’re paying lip service to the issue and that in itself is an improvement.
I’m going to applaud it if for no other reason than that the companies are showing their understanding that you have to speak, and loudly, if you want to be heard at all. In time, I suspect, laws will be passed on the subject and if those who support genetic testing for genealogy are going to have a voice in shaping those laws it will be through efforts like this one.
A lobbying organization, based in Washington, headed by a white shoe lawyer. What more could we ask? Our little hobby is blossoming.
I would feel much better about this coalition if it included some professional genealogists, genetic genealogists and a few members of the general public. Self-policing is good but would be better with a team that included informed, but impartial, participants.
That’d be ideal, for sure, but I’m glad at least these players are stepping up on this.
Definitely a step in the right direction, regardless of any motives/intentions.
Agreed that it is a step in the right direction. I also like the idea of having independent genealogists participate in the coalition.