Transcription of Privacy Best Practices for Consumer Genetic Testing ...
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Privacy Best Practices for Consumer Genetic Testing ...
Privacy best Practices for Consumer Genetic Testing Services July 31, 2018. 1400 Eye Street, NW, Suite 450. Washington, DC 20005. Table of Contents Introduction .. 1. I. Transparency .. 3. II. Consent .. 4. III. Use and Onward Transfer .. 7. IV. Access, Integrity, Retention, and Deletion .. 7. V. 9. VI. Security .. 9. VII. Privacy by Design .. 9. VIII. Consumer Education .. 10. Annex A: Annex B: Legal and Regulatory Guidance ..13. Annex C: Genetic Data Sharing Policies .. 16. About the Future of Privacy Forum .. 19. Page 1 | July 2018. Introduction Consumer Genetic and personal genomic Testing are tests that are marketed to Consumers by private companies. This type of Testing has increased Consumers' access to and control of their Genetic Data; empowered Consumers to learn more about their biology and take a proactive role in their health, wellness, ancestry, and lifestyle; and enhanced biomedical research efforts.
Page 2 | July 2018 related to the collection, retention, use, sharing, and research based on Genetic Data. The principles covered in these Best Practices include: (1) Transparency; (2) Consent; (3) Use
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