Common Rule

WPF urges National Institutes of Health to expand privacy guidance for researchers

WPF is urging the National Institutes of Health to do more to properly advise the research community and to protect data subjects in its draft guidance on data management and sharing. WPF is asking for changes to the NIH guidance because in the US, much health research data in the hands of researchers is not subject to the privacy or security rules in HIPAA.

WPF Files Comments on Federal Proposal for Human Subject Research (Common Rule)

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…

Public comments: WPF urges FTC to focus on providing statistical parity for consumers (Big Data workshop)

WPF urges FTC to focus on consumers’  ability to control their digital exhaust and statistical parity for big data era At the FTC workshop on Big Data September 15, Big Data: Tool for Inclusion or Exclusion?, panelists including the World Privacy Forum discussed legal and ethical frameworks that are applicable to large datasets and issues

Privacy Spotlight: FTC Big Data Event

Big Data and its potential for inclusion and exclusion was on center stage this past September as the FTC held a day-long workshop with experts from industry, technology, privacy, civil liberties, and academia. World Privacy Forum’s Executive Director Pam Dixon, a panelist at the event, spoke about Big Data and privacy, emphasizing several key points, including the need for statistical parity, fairness, and the need for keeping existing consumer protection regulation.

WPF Comments about Privacy and Big Data: Ethical Framework and Rights Essential

The World Privacy Forum filed comments with the U.S. Department of Commerce in response to its Request for Comments about big data, privacy, and the Consumer Privacy Bill of Rights. The White House Big Data report recognized that Big Data “raises considerable questions about how our framework for privacy protection applies in a big data ecosystem” and has the potential to “eclipse longstanding civil rights protections in how personal information is used in housing, credit, employment, health, education, and the marketplace.” This is among our concerns as well, and our comments focused on understanding big data’s benefits while drawing attention to where there are significant privacy risks that need to be addressed.