Genetic privacy — Genome-wide association studies present complex and challenging privacy issues. The National Institutes of Health, in a published request for information, asked for public comment on its proposed policy regarding its support and management of a central genomic repository for genome-wide association studies. In comments filed with the National Institutes of Health, the World Privacy Forum raised concerns about the proposed NIH policy in the specific areas of genetic identifiability, secondary uses of the genetic data, oversight, legal protections, and informed consent.
Medical privacy | HIPAA — Five groups joined the World Privacy Forum in asking for changes to be made to a proposed rule on how medical healthcare claims attachments are handled electronically. The World Privacy Forum and the EFF, EPIC, Privacy Rights Clearinghouse, Privacy Activism and U.S. Public Interest Research Group (U.S. PIRG) asked that physicians be given more control over what parts of health records they send electronically to insurance companies, that psychotherapy notes not be included when sending health records for insurance payment, and that the HIPAA Privacy Rule be rigorously applied to scanned health records.