U.S. Department of Health and Human Services

Genetic privacy | SACGHS — The World Privacy Forum gave testimony to the Secretary’s Advisory Committee on Genetics Health and Society regarding privacy issues stemming from direct-to-consumer advertising and consumer-initiated genetic testing. The World Privacy Forum noted that a great deal of consumer health data circulates outside the protections of HIPAA, and a substantial market for this kind of consumer health data already exists. Genetic data about consumers that is acquired outside the clinical context and is not subject to the protections of HIPAA (for example, through consumer-initiated genetic testing) will likely not be any more protected than other forms of consumers’ health-related information from the current demands of the market. However, the consequences of leakage of genetic information about consumers into the marketing stream could have potentially negative consequences for both those consumers and their blood relatives. The World Privacy Forum urged the committee to include specific recommendations about privacy in its upcoming report to the Secretary, and also urged the committee to work with other federal agencies to set up a pre-market oversight structure that includes significant and meaningful privacy protections for genetic testing occurring outside of the protections of HIPAA.

Genetic Privacy — The World Privacy Forum filed public comments with the Department of Health and Human services in response to an HHS request for information regarding the use of patients’ genetic data for research, health care, and for use in electronic health records. The World Privacy Forum is requesting that HHS use all Fair Information Principles in any personalized health care projects, and is requesting that a formal ELSI (ethical, legal, and social implications) committee be set up to oversee any projects, among other requests.

The World Privacy Forum filed public comments with the Department of Health and Human services in response to an HHS request for information regarding the use of patients’ genetic data for research, health care, and for use in electronic health records. The World Privacy Forum is requesting that HHS use all Fair Information Principles in any personalized health care projects, and is requesting that a formal ELSI (ethical, legal, and social implications) committee be set up to oversee any projects, among other requests.

Identity Theft — The World Privacy Forum filed comments and recommendations with the President’s Identity Theft Task Force. The task force’s draft report and recommendations did not include or contemplate medical identity theft solutions for victims; the WPF has requested and recommended that this be corrected. Medical identity theft victims need more help, more recourse, and agency attention.

Medical privacy | Medicare Part D — In comments filed with the Centers for Medicare and Medicaid Services, the World Privacy Forum requested that CMS give effect to data restrictions that Congress has expressly included in the law. WPF also requested that CMS include in its standard agreements for use of CMS data a requirement that the recipient obtain a certification of confidentiality for all identifiable CMS data. WPF also requested that CMS perform a regulatory impact analysis and publish a system of records notice.