The Nuremberg Code, an extraordinary document around ethics and research on human subjects written after the research abuses that took place during World War II, is akin to a global Emancipation Proclamation for human research subjects. The Nuremberg Code’s 10 principles remain a timeless rendering of thought on what should be in place prior to any entity conducting research on human subjects, and this code forms the philosophical foundation of a regulation in the US known as the Common Rule. We have written extensive comments on the US proposal that will update the Common Rule…
In our view, the Department’s proposed changes to HIPAA regarding marketing are contrary to the law. Current law requires that paid communications for any marketing should be allowed only on an opt-in basis. We oppose the Department’s proposed regulation that would allow communications paid for by third parties who are not the entities whose product or service is being described in the communication.
Health privacy and HIPAA — The World Privacy Forum filed two sets of detailed regulatory comments on recently proposed changes to HIPAA. The first comments focused on proposed changes to HIPAA in the area of marketing patient information. The proposed changes would be harmful to patient privacy, and are contrary to the law. WPF was joined in the marketing comments by the Center for Digital Democracy, Consumer Action, Consumer Federation of America, the Electronic Frontier Foundation, Privacy Activism, Privacy Rights Clearinghouse, and Privacy Times. The second set of comments WPF filed included the comments on marketing as well as on additional provisions that would be problematic if enacted.
Financial privacy and SEC — The World Privacy Forum filed comments today criticizing the SEC proposed regulations that would release an unprecedented amount of financial details about individual borrowers through the EDGAR database. The WPF was joined by other privacy, consumer, and human rights organizations in its comments, which focused on the privacy issues with the proposed regulations. Pam Dixon, executive director of the WPF, stated in the comments that the SEC’s new regulations would “Place on the public record and online the largest amount of personal financial information about borrowers ever disclosed, including information never before made public.” The comments also note that the SEC’s plan greatly increases the risk of identity theft for individual borrowers whose information will be released publicly.
Genetic non-discrimination regulations (GINA) — The World Privacy Forum filed comments on proposed regulations for implementing Title I of GINA, the Genetic Non-Discrimination Act. The WPF requested a change to the proposed regulations, asking the Department of Health and Human Services require immediate posting of revised notices of privacy practices on the web sites of affected health plans. Under the proposed regulations, written notice of revised privacy practices to individuals could be delayed due to the cost of postal mailing. The WPF noted that a revised privacy notice posted on a health plan’s web site would not incur postal costs, and that regulated entities should take this minimum step to inform consumers of any changes regarding privacy practices affecting genetic non-discrimination.