Privacy Best Practices for Consumer Genetic Testing Services

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Future of Privacy Forum, along with leading consumer genetic and personal genomic testing companies 23andMe, Ancestry, Helix, MyHeritage, and Habit, released Privacy Best Practices for Consumer Genetic Testing Services.

Consumer genetic tests, tests that are marketed to consumers by private companies, have empowered consumers to learn more about their biology and take a proactive role in their health, wellness, ancestry, and lifestyle. When consumers expressly grant permission and provide an informed consent, they can choose to share their genetic data with responsible researchers to help them discover important breakthroughs in biomedical research, healthcare, and personalized medicine.

The Best Practices establish standards for genetic data generated in the consumer context by making recommendations for companies’ privacy practices that require:

  • Detailed transparency about how Genetic Data is collected, used, shared, and retained including a high-level summary of key privacy protections posted publicly and made easily accessible to consumers;
  • Separate express consent for transfer of Genetic Data to third parties and for incompatible secondary uses;
  • Educational resources about the basics, risks, benefits, and limitations of genetic and personal genomic testing;
  • Access, correction, and deletion rights;
  • Valid legal process for the disclosure of Genetic Data to law enforcement and transparency reporting on at least an annual basis;
  • 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;
  • Restrictions on marketing based on Genetic Data; and
  • Strong data security protections and privacy by design, among others.

READ BEST PRACTICES
Should you have questions about this report, please contact the lead author, Carson Martinez, at [email protected]


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