Genetic privacy — The World Privacy Forum presented a talk at the World Congress in Washington D.C. today on the intersection between genetic privacy and marketing, and on genetic issues and medical identity theft. The presentation exposed the list marketing activities surrounding health care data, and examined how the current loopholes in the recently passed Genetic Information Nondiscrimination Act (GINA) would not necessarily ease issues with incidental collection and use of genetic information.
OECD | Fair Information Practices — At a key meeting of the OECD on the future of the Internet economy, the OECD Secretary General Angel Gurria reaffirmed support of the 1980 OECD Privacy Principles. Also, Secretary General Angel Gurria expressed support for formalizing the participation of civil society in OECD going forward and for paying more attention to information security and identity theft problems. Secretary General Gurria noted that “A more decentralised, networked approach to policy formulation for the Internet Economy that includes the active participation of stakeholders needs to be the norm.” Many parts of the recent OECD meeting may be viewed online.
Information about fair information practices.
Genetic privacy — The collection of DNA material from 500,000 to 1,000,000 or more individuals as part of a large U.S. medical research project raises many challenging ethical, legal, and privacy issues. An advisory committee reporting to the Office of the Secretary of Health and Human Services ( the Secretary’s Advisory Committee on Genetics, Health and Society) has published a detailed analysis of the issues such a project and its associated databases and biobanks would raise in a draft report. The committee’s final report and policy recommendations will be submitted to the Secretary of HHS. The World Privacy Forum has submitted public comments on the draft; the comments include key policy recommendations.
Domestic surveillance — The World Privacy Forum joined a coalition of 41 civil liberties, privacy, and trans-political organizations in a letter requesting a thorough and comprehensive inquiry by the Committee on the Judiciary into domestic surveillance program(s).