Center for Democracy & Technology

The Center for Democracy & Technology today released a report recommending privacy and security protections for personal health records (PHRs). CDT believes PHRs should be subject to comprehensive policies comprised of a mix of legal requirements and voluntary best practices. CDT’s recommendations – summarized below – are designed to preserve public trust in PHRs and enable the field to flourish.

A PHR is essentially an electronic tool that enables consumers to store, manage, use, and share their personal health information. A key characteristic of PHRs is the high degree of control the individual consumer – not the health care provider – has over the service, including what data gets uploaded to the PHR and with whom it is shared. Through PHRs, people can monitor chronic conditions, explore treatment and insurance options, ensure their health information is correct, share data with others to gain insight and support, and hold their providers to high standards of accountability. However, the success of PHRs will depend in substantial part on whether consumers trust that their sensitive information is protected.

Privacy is a building block of trust in this digital age; and yes, there's an "app" for that.  It's called a federal baseline consumer privacy bill, it just hasn't passed… yet.  

CDT President Leslie Harris testified yesterday at a hearing of the House Subcommittee on Commerce, Trade, and Consumer Protection examining two current privacy bills; the Best Practices Act (H.R. 5777) from Subcommittee Chairman Bobby Rush and a draft bill from from Congressmen Rick Boucher.  In her written testimony Harris said:
 

CDT Completes Transition to New Board with Election of Four New Members

WASHINGTON – The Center for Democracy & Technology today is pleased to announce four new board members:  Bill Bernstein, member of the law firm Manatt, Phelps & Phillips; Pamela Jones Harbour, former FTC Commissioner; Doug Lowenstein, President and CEO of the Private Equity Council; and Jimmy Wales, founder of Wikipedia.  

With the appointment of these individuals, CDT completes the two-year transition to a new board. At a time when the issues facing the Internet are becoming increasingly complex and global in nature, the wisdom, insight, and leadership of our board will strengthen CDT and help advance its mission of keeping the Internet open, innovative, and free.  CDT board members serve for three years.   

"The new Board members bring enormous talent and a diversity of relevant experiences to our organization," said CDT President Leslie Harris.  "Our ability to attract thoughtful, independent, and impassioned leaders has always been one of our key assets," Harris said.  "Our new board members share our vision for the Internet and a dedication to CDT's mission. They are committed to sustaining CDT’s growth and expanding the organization’s global influence.”

CDT's new board members:

Congressman Bobby Rush, (D-Ill.), Chairman of the House Energy and Commerce Committee's Subcommittee on Commerce, Trade, and Consumer Protection, has released his draft of a bold consumer privacy bill, called the Best Practices Act.

In May, Rep. Boucher, Chairman of the House Energy and Commerce Committee’s Subcommittee on Communications, Technology and the Internet, reinvigorated the conversation around baseline consumer privacy legislation when he circulated a draft consumer privacy bill for comment.  Chairman Rush’s bill builds on the groundwork of Boucher's draft but goes further to include a full set of fair information practices. 

Both the Rush bill and the Boucher draft address basic concerns of consumers. A Zogby poll released last month found that 88% of Americans believe that companies "tracking where an Internet user goes on the Internet without the user's permission is an unfair business practice," and a September 2009 study showed that over 60% of Americans believe there should be laws prohibiting advertisers from retaining data about them.