Genetic Privacy | Bioethics — WPF filed comments with the Presidential Commission for the Study of Bioethics today urging the Commission to recognize the need for enhanced genetic privacy protections in a digital world. WPF noted that “The increasing identifiability of genetic data presents major privacy issues for research activities that must be acknowledged and addressed.” WPF suggested four key ways that Certificate of Confidentiality programs could be enhanced for privacy protection, and urged the Commission to speak out about the importance of protecting patient privacy in research activities involving genetic information. “The Commission should advocate providing patients with reasonable controls over research uses of their data as electronic records develop and spread throughout the health care system.” Public comments may be submitted to the Commission until May 25, 2012.
Stop SOPA & PIPA —- The World Privacy Forum is deeply concerned about the profound, far-reaching privacy consequences of two bills, SOPA and PIPA. The bills have many negative aspects. In terms of the privacy impacts, one of the serious consequences is that the right to create and use anonymization software tools would be essentailly
World Privacy Forum information and materials on Genetic Privacy.
WPF report announcement — The World Privacy Forum’s newest report examines the privacy and confidentiality issues of cloud computing that have been largely overlooked to date. It is a thorough analysis with policy findings.
Privacy in the Clouds: Risks to Privacy and Confidentiality from Cloud Computing was written by Robert Gellman for the World Privacy Forum.
Cloud computing tips for consumers and business are also available.
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.