A Preliminary FTC Staff Report on "Protecting Consumer Privacy in an Era of Rapid Change: A Proposed Framework for Businesses and Policymakers" #00465

Submission Number:
00465
Commenter:
Ashley Goren
Organization:
Genetic Alliance
State:
District of Columbia
Initiative Name:
A Preliminary FTC Staff Report on "Protecting Consumer Privacy in an Era of Rapid Change: A Proposed Framework for Businesses and Policymakers"

Genetic Alliance, a non-profit health advocacy organization committed to transforming health through genetics, supports the comments submitted by Wolters Kluwer Pharma Solutions. Genetic Alliance believes that patient de-identified prescription data sets that comply with the Health Insurance Portability and Accountability Act (HIPAA) serve crucial roles in improving health care. De-identified prescription data sets provide instrumental information to researchers, public health organizations, government agencies, and pharmaceutical companies. They are used to expedite the development and improvement of pharmaceuticals, facilitate medication quality and cost effectiveness review, assist in detecting adverse drug reactions, and aid in identifying and responding to infectious outbreaks. HIPAA imposes stringent standards for de-identification that were carefully designed to protect patients privacy while recognizing the societal interests of properly de-identified data. Based on HIPAA s rigorous privacy standards and the numerous benefits that come from this information, we urge the FTC to expressly exclude HIPAA de-identified data from any consumer privacy protection framework.