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About Us and Contact Information
Mission Statement
The World Privacy Forum is a nonprofit, non-partisan 501 (C) (3) public
interest research group. The organization is focused on conducting in-depth
research, analysis, and consumer education in the area of privacy. It
is the only privacy-focused public interest research group conducting
independent, longitudinal work. The World Privacy Forum has had notable
successes with its research, which has been groundbreaking and consistently
ahead of trends. World Privacy Forum reports have documented important
new areas, including medical identity theft. Areas of focus for the World
Privacy Forum include health care, technology, and the financial sector.
The Forum was founded in 2003 and works both nationally and internationally.
The Forum also works to encourage collaborative efforts among other non-profits.
Contact Us
- WPF Office: 760. 436.2489 (Pacific)
- Email: info2009@worldprivacyforum.org
- PGP Key is available here: secureemail.html
- Mailing address: 2033 San Elijo Avenue, #402, Cardiff by the Sea,
CA 92007, USA
Funding
The World Privacy Forum is funded by the Rose Foundation Consumer Privacy
Rights Fund, the California Consumer Protection Foundation, by cy pres
privacy settlements, and by individual donations.
World Privacy Forum Activities
A brief selection of our past activities includes:
- The World Privacy Forum researched and published the first major report
on medical identity theft (May 2006) and brought this crime to the attention
of the public for the first time. The World Privacy Forum coined the
term "medical identity theft" in its report on the topic.
The Forum also has published the only detailed consumer education and
victim materials on this crime. California passed a new law that went
into effect in 2008 based on the recommendations in the WPF medical
identity theft report. The World Privacy Forum's continuing activities
in this area have made a substantial impact in the awareness and understanding
of this crime for both victims and health care providers.
- The World Privacy Forum led a consensus group of non-profits in a
fall 2007 meeting that culminated in the now well-known Do Not Track
proposal presented to the Federal Trade Commission.
- The World Privacy Forum published the first in-depth legal and policy
analysis of patient and consumer medical files held outside the protections
of HIPAA in winter 2008, an area of upcoming importance.
- The World Privacy Forum has researched and presented leading-edge
thinking about genetic privacy to the Institute of Medicine and to the
Secretary's Advisory Committee on Genetics, Health and Society, among
others. WPF's most recent testimony before the Secretary's Advisory
Committee on Genetics in winter 2008 led to substantive positive changes
in recommendations about privacy and genetics in the SACGHS report.
- The World Privacy Forum has been appointed by the state of California
to a board tasked with finding innovative ways to protect patient privacy
and security in the rapidly modernizing health care sector. The World
Privacy Forum serves as co-chair for this board, the California Privacy
and Security Advisory Board.
- The World Privacy Forum researched and testified twice about the iPledge
program in 2007. iPledge is a mandatory registration system for people
who take the acne drug Accutane, which had systemic privacy issues.
The WPF was the only organization to point out the profound privacy
problems in the system. After the World Privacy Forum analysis and testimony,
the FDA asked for substantive changes to the privacy for the system,
which impacts approximately 300,000 people a year.
- The World Privacy Forum researched and published a series of longitudinal
research reports and related work in the area of job search privacy,
which has led to significant changes and improvements in the oversight
of fraud at online job sites.
- The World Privacy Forum publishes key consumer education resources,
including the Top Ten Opt Out list, Search Engine Privacy Tips, Resume
Privacy Tips, Tips for Victims of Medical Identity Theft, tips on Security
Freezes, and much more.
- The World Privacy Forum published a series of research reports on
free credit reports that led to FTC enforcement actions against "imposter
domains."
Selected Biographies
Pam Dixon, Executive Director
Pam Dixon founded the World Privacy Forum in November 2003. An author
and a researcher, she has consistently broken critical new ground in her
work. She has written highly respected and influential studies in the
area of privacy; she researched and wrote the first report to exist on
medical identity theft (May 2006), identifying and bringing that topic
to the public for the first time. Medical identity theft is now a widely
acknowledged issue. In 2008, a California law was passed based on Dixon's
research. She has written other influential studies in the area of workplace
and job search privacy as well as financial privacy and Internet privacy.
Dixon is the co-chair of the California Privacy and Security Advisory
Board, a board that reports to California's Secretary of Health. She is
also a board member of HITSP, a national-level board for determining health
information technology standards. In 2008, Dixon won the Consumer Excellence
Award.
Dixon was formerly a research fellow with the Privacy Foundation at Denver
University's Sturm School of Law. There, she researched and wrote about
technology-related privacy issues. Dixon has written extensively about
technology both as a book author and as a former columnist for the San
Diego Union Tribune. Ms. Dixon has written seven books for major publishers,
including two critically acclaimed books about technology and consumers.
Her books include titles for Random House / Times Books, among other major
publishers. Dixon's first book was a finalist for the Computer Press Awards.
Her book on distance education is a classic and is used in college classrooms
today. Dixon is frequently quoted in the media regarding privacy and security
issues. A selection of her press clippings are located here.
Pam Dixon Testimony:
- Health and Human Services, Medical ID theft workshop,
October 15, 2008.
- Secretary's Advisory Committee on Genetics, Health and Society,
February 13, 2008. Written
testimony available.
- FDA: iPledge program, August 1, 2007. Regarding
Privacy and the iPledge Program. Written
testimony available.
- Joint FDA /AHRQ Public Meeting, Implementation of
Risk Minimization Action Plans (RiskMAPs), June 26, 2007. "The
Lack of FDA Attention to Privacy Standards in RiskMAPS has Resulted
in the Unethical and Inappropriate Marketing of Patient Information
Collected for Treatment Purposes." Written
testimony available.
- California State Assembly Health Committee hearing
on medical identity theft and data breach, April 24, 2007. Written testimony
available.
- American Health Information Community (HHS), September
29, 2006, Washington DC. Medical Identity Theft and Authentication
Issues. Written
testimony available.
- National Committee on Vital and Health Statistics,
August 16, 2005, San Francisco, CA. Hearing of the Privacy and Confidentiality
subcommittee. "Electronic Health Records and the National Health
Information Network: Patient Choice, Privacy, and Security in Digitized
Environments." Written testimony available: (HTML)
(PDF).
- California Senate Select Committee on the Legal, Social &
Ethical Consequences of Emerging Technologies, Informational
Hearing, Senator Deborah Bowen, May 13 2005: "Email As Personal
Property vs. Private Communication."
- California state senate banking, finance, and insurance committee
hearing regarding Choicepoint, Senator Jackie Speier, March
30, 2005: "Information Civil Rights for Consumers: Why Fundamental
Rights in a Digital Age are Necessary."
- HSPD-12 Public Meeting, January 19, 2005: "Privacy
Implications and Suggestions for FIPS 201 and the Federal ID Card Implementation."
John Boak, Web Master
John Boak is a fine artist and graphic designer in Denver, Colorado.
A graduate of Yale University with a degree in Fine Arts, his design experience
spans technologies from early 19th century letter press to offset layout
to Web design. He is the executive director for the Institute of Applied
Cubism. www.boakart.com.
Articles in which Pam Dixon, the World Privacy Forum, or its researchers
have been quoted.
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