Fair Information Principles

Dec 19 2007

Fair Information Practices (FIPS) page update

Fair Information Practices — The World Privacy Forum has updated its page on Fair Information Practices to include the new work by Robert Gellman in this area. His article, Fair Information Practices: A Basic History, December 2007, is an important history of the development of Fair Information Practices. It includes information that even experts familiar with FIPs may not know.

Oct 16 2007

World Privacy Forum gives keynote speech to AHIMA on medical identity theft; outlines 8-point best-practice responses to the crime

Medical identity theft | AHIMA — Executive director Pam Dixon spoke to thousands of AHIMA delegates in Philadelphia sharing the latest information on medical identity theft and outlining 8 best practice responses to the crime for the health care sector. Dixon specifically asked for the creation of national guidelines for helping medical identity theft victims, the ability for victims to set red flag alerts in their health care files, that providers train and have dedicated personnel to help medical identity theft victims, “john and jane doe” file extractions, a focus on addressing insider access to patient information, risk assessments specifically for medical identity theft, and educational efforts. The information in the speech was based on the latest World Privacy Forum research in the area of medical identity theft.

May 24 2007

World Privacy Forum files public comments and recommendations on pharmacogenomics privacy: all patient-specific PGx research should require certificates of confidentiality

information will expand greatly in the future. In public comments filed with the National Institutes of Health on pharmacogenomics (PGx) research, or research using genetic information to create highly personalized medicine, the World Privacy Forum recommended that all research activities that involve any type of patient-specific genetic information be required to have certificates of confidentiality, whether that information appears identifiable or not. The WPF also urged the NIH to require strong data use agreements to protect individuals’ privacy. The WPF also urged NIH and the Department of Health and Human Services to reinstate the position of “privacy advocate” so as to provide oversight in this area.

May 08 2007

World Privacy Forum and Electronic Frontier Foundation File Public Comments on REAL ID

REAL ID | National ID — The World Privacy Forum and the Electronic Frontier Foundation (EFF) filed joint comments with the Department of Homeland Security about the proposed national ID system, REAL ID. The comments discuss the substantial flaws in the proposed REAL ID system including concerns about the overall structure of the program, the cards, the databases attached to the cards, the lack of controls on “function creep,” the possibilities for discrimination, the potential for increased risk of identity theft, issues related to potential gaps in coverage for recipients on Federal programs, among other issues.

Feb 05 2007

World Privacy Forum comments about the ethical, legal, and social implications of using genetic health care data in electronic health records

Genetic Privacy — The World Privacy Forum filed public comments with the Department of Health and Human services in response to an HHS request for information regarding the use of patients’ genetic data for research, health care, and for use in electronic health records. The World Privacy Forum is requesting that HHS use all Fair Information Principles in any personalized health care projects, and is requesting that a formal ELSI (ethical, legal, and social implications) committee be set up to oversee any projects, among other requests.

New Report: Risky Analysis: Assessing and Improving AI Governance Tools

We are pleased to announce the publication of a new WPF report, “Risky Analysis: Assessing and Improving AI Governance Tools.” This report sets out a definition of AI governance tools, documents why and how these tools are critically important for trustworthy AI, and where these tools are around the world. The report also documents problems in some AI governance tools themselves, and suggests pathways to improve AI governance tools and create an evaluative environment to measure their effectiveness. AI systems should not be deployed without simultaneously evaluating the potential adverse impacts of such systems and mitigating their risks, and most of the world agrees about the need to take precautions against the threats posed. The specific tools and techniques that exist to evaluate and measure AI systems for their inclusiveness, fairness, explainability, privacy, safety and other trustworthiness issues — called in the report collectively AI governance tools – can improve such issues. While some AI governance tools provide reassurance to the public and to regulators, the tools too often lack meaningful oversight and quality assessments. Incomplete or ineffective AI governance tools can create a false sense of confidence, cause unintended problems, and generally undermine the promise of AI systems. The report contains rich background details, use cases, potential solutions to the problems discussed in the report, and a global index of AI Governance Tools.
National IDs Around the World — Interactive map

About this Data Visualization: This interactive map displays the presence...
Report: From the Filing Cabinet to the Cloud: Updating the Privacy Act of 1974

This comprehensive report and proposed bill text is focused on the Privacy Act of 1974, an important and early Federal privacy law that applies to the government sector and some contractors. The Privacy Act was written for the 1970s information era -- an era that was characterized by the use of mainframe computers and filing cabinets. Today's digital information era looks much different than the '70s: smart phones are smarter than the old mainframes, and documents are now routinely digitized and stored and perhaps even analyzed in the cloud, among many other changes. The report focuses on why the Privacy Act needs an update that will bring it into this century, and how that could look and work. This work was written by Robert Gellman, and informed by a two-year multi-stakeholder process.