WPF filed comments today asking The National Institutes of Health to make changes to its draft Genomic Data Sharing Policy for sharing, for research purposes, of large-scale human and nonhuman genomic data. The World Privacy Forum comments focus on human genomic privacy. “We are most concerned in our comments that the NIH find a full range of privacy protections for genomic data to be used for research. We are interested in a full arsenal from encryption to certificates of confidential to civil and criminal penalties for misuse. Consent — as alluring as the idea is — cannot by itself carry all of the privacy water,” said Pam Dixon, executive director of the World Privacy Forum.
Learn to protect mobile users and build safe mobile apps at the Mobile Privacy Summit Oct. 23 in Los Angeles. The office of California Attorney General Kamala Harris and the Federal Trade Commission join WPF’s Pam Dixon and other privacy experts to discuss best practices and regulatory requirements you should be aware of to ensure the privacy of mobile app users. Registration is free of charge.
Japan — Under the mai nannbaa-ho (マイナンバー法) My Number Act (enacted May 13, 2013, also called the Social Benefits and Tax Number Act), Japan’s citizens will be assigned unique numbers to track income, social security, taxes, welfare and benefits, and certain information in disasters. Japan will start assigning numbers to its citizens in late 2015. The My Number Act brought with it concern about the use of the numbers as a unique national ID. As a result, Japan will establish a new independent Data Protection Authority called the Specific Personal Information Protection Commission, and will consist of a Chairman and six commission members. The Chairman and Commissioners will be appointed by Japan’s Prime Minister, and confirmed by Japan’s National Diet. The Commission will oversee the use of the new Social Security and Tax system numbers. Unlike many national ID numbering systems, Japan did not set up a centralized database for the numbers due to concerns about data breach and privacy.
Professor Hiroshi Miyashita from Japan’s Chuo University, and an Advisor to the Consumer Affairs Agency (CAA) — gave a talk Oct. 1 at a Privacy Laws & Business Asia Roundtable in London. He told PL& B that the new Commission is to “ensure the proper handling of personal numbers and other specific personal information, and provide guidance, advice and recommendations.” Professor Miyashita said enforcement powers will be limited to requiring reports and conducting on-site inspections. Additional documents regarding the new DPA indicate that there will be a role for the Commission in overseeing release of personal information in disasters, and that the Commission will also issue guidance regarding the use of identifying numbers.
San Diego — The California AG’s office and the US Federal Trade Commission are holding a mobile privacy summit October 23, in Santa Monica, California. The emphasis of the event is to learn how to protect consumers and build safe mobile apps, and is directed at app developers and businesses. Jessica Rich, FTC Consumer Protection
San Diego, CA — The World Privacy Forum is very pleased to announce the publication of a major undertaking, the complete update and revision to our landmark Patient’s Guide to HIPAA. The new guide reflects the changes in HIPAA that took effect September 23, 2013. The Patient’s Guide to HIPAA is a landmark publication because it is the first and to our knowledge — only complete guide written expressly for patients. It offers a roadmap through the thicket of dense health privacy laws and rules that many patients have questions about. The purpose of this guide is to help patients understand how to make health privacy laws work to protect their privacy. Longtime World Privacy Forum contributor Bob Gellman is primary author of the Guide, including the new version. Begin exploring the update at the HIPAA Guide Home: https://www.worldprivacyforum.org/2013/09/hipaaguidehome/ .
