The World Privacy Forum filed extensive comments with the US Department of Health and Human Services about its proposed changes regarding the rules governing human subject medical research. In the comments, WPF noted that the HHS approach to privacy for research subjects was incomplete and did not use all Fair Information Practices. WPF strongly urged HHS to revise its proposal on a number of issues, including consent and the use of biospecimens in research. The World Privacy Forum is urging HHS to acknowledge that the realm of health data that is truly non-identifiable has shrunken remarkably, for example, biospecimens with DNA cannot be considered non-identifiable anymore. “In our comments, we are requesting that HHS give individuals the opportunity to make choices about the use of their own health data and specimens,” said Executive director Pam Dixon. WPF also stated in its comments that “A central database with identifiable information about participants in human subjects research is a terrible idea.” (See p. 21 of WPF comments.)

This report is a landmark analysis and history of self-regulatory efforts in the area of privacy. The report is authored by Robert Gellman and Pam Dixon. It includes details about programs such as the IRSG, the Privacy Leadership Initiative, the Privacy Alliance, and other privacy self-regulatory programs.

Current online privacy debates focus on respecting the privacy interests of Internet users while accommodating business needs. Formal and informal proposals for improving consumer privacy offer different ideas for privacy regulation and privacy self-regulation, sometimes called codes of conduct. [1] Some in the Internet industry continue to advance or support ideas for privacy self- regulation. Many of these same players proposed and implemented privacy self-regulatory schemes that started in the late 1990s.

This section offers a historical review of privacy self-regulation that occurred in the years just before and just after 2000. For a variety of reasons, it is not necessarily fully comprehensive. Some self-regulatory efforts may have disappeared without a trace. Activities within existing trade associations are difficult or impossible to assess from evidence available to those outside the associations. However, this discussion captures the leading organizations of the time. [13]

This section reviews several other privacy self-regulatory activities that share some characteristics with the industry self-regulatory programs discussed above, but these activities differ in various ways. The most noticeable differences are the role of the government in the programs. The Department of Commerce is involved in the Safe Harbor Framework, and the Federal Trade Commission is involved in the Children’s Online Privacy Protection Act.