EPIC Supports Privacy Safeguards for Genetic Information, Recommends Robust Techniques for Deidentification

EPIC filed comments with the Department of Health and Human Services, advising the federal agency to strengthen the requirements for classifying data as “de-identified” under the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule. HHS proposed a rule that would clarify HIPAA and the Genetic Information Nondiscrimination Act (GINA), by providing that genetic information is “health information” and prohibiting the use of such information for underwriting purposes or other discriminatory purposes. EPIC supports this proposed regulation but warned that a safe harbor provision for de-identified data could undercut privacy safeguards unless the techniques were shown to be "robust, scalable, transparent, and provable." For more information, see EPIC: Reidentification.


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