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.

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Effective Advocacy

The Coalition will work toward a unified federal policy agenda focused on issues impacting genetic data privacy.

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Enhanced Transparency

The Coalition will partner with key government and policy stakeholders regarding privacy and security policies for the protection of genetic data.

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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.