Today The Guardian published an op-ed I wrote about employer-sponsored wellness programs. You can find that op-ed here. I have researched and written about HIPAA, health plans, wellness, predictive analytics, and big data for years now. A lot of my work coalesced together when Robert Gellman and I researched and wrote the Scoring of America
Update for February 29, 2016: The US and the European Commission have released new details about the proposed Privacy Shield program. We have published a new post about this release here. Briefly, the US Department of Commerce has released a 132-page package containing the program principles, letters from the FTC, the Department of Transportation, the Office of the Director
The closely watched Safe Harbor talks to craft new privacy rules for transatlantic data flows between the US and the EU have resulted in some preliminary signals today, although a final outcome is still pending. Commissioner Jourova, speaking before the Committee on Civil Liberties, Justice, and Home Affairs, said that the talks had not yet produced an agreement.
The World Privacy Forum has filed extensive comments on the proposed changes to how the Genetic Information Nondiscrimination Act will be interpreted. Our comments focus on how the proposal will impact wellness program privacy, as well as family and spousal privacy. In our comments, we discuss our concerns with a variety of aspects of wellness program privacy, including the fact that much data from wellness programs falls outside of HIPAA protections. We also have strongly urged the EEOC to not allow employers to purchase genetic information about employees from third parties without consent, among other items related to this issue.
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…