New Medical Privacy Rules Need Editing
by Amitai Etzioni
Pity President Bush. He wants to stay on the message of the week, but the world just won't hold still.
Like it or not, Bush soon must tip his hand on an issue that is of major concern to most Americans, but that is not at the top of his agenda: privacy.
The decision Bush is being pressed to make is whether to allow major new medical privacy regulations to go into effect, or whether to postpone, change or kill them.
The regulations, issued during the waning weeks of the Clinton administration, would require that every health care provider appoint a "privacy official" and develop detailed privacy policies and procedures. Health care providers would have to keep track
of everyone who received medical information from them. Patients could demand an accounting of all of these disclosures. Those who violate the regulations would be subject to hefty civil and criminal penalties.
Consumer groups have hailed the regulations as the first comprehensive federal medical privacy standards. But critics, while praising the goal of protecting the privacy of people's medical records, say these regulations go too far and should be modified before their effective date, which was going to be Monday, but now has been delayed until at least mid-April by a technical glitch.
At first, it might seem obvious what pro-business Bush will do. Businesses will have to pay a high cost -- estimated by the government at $ 17.6 billion over 10 years an d far higher by industry groups -- to put these extensive and cumbersome regulations into effect. They also are the ones who will lose most if the trade in private medical information is inhibited. Employers use such information in hiring decisions. Banks draw on them to make loans -- and to call them in. Pharmaceutical companies can target promotions of drugs they peddle.
No wonder the main difference of opinion among business lobbies is whether to castrate or kill the regulations.
Supporters of the regulations, on the other hand, are not groups that would seem high on Bush's list to please: the American Civil Liberties Union and a whole slew of other professional privacy advocates.
When the regulations were first posted for public comment, they were relatively moderate. But Janlori Goldman, a former ACLU staff attorney who now directs the Health Privacy Project, single-handedly generated about 28,000 comments demanding tighter rules. She was so pleased with the final regulations that she helped President
Clinton introduce them to the media. She called them -- quite correctly -- a "major victory" for her side, although she said she would like them to be still tougher. (She is especially troubled by law enforcement's right to access the data -- which these authorities badly need, given the gross abuses of Medicare and Medicaid funds.)
Given this alignment of forces, one would expect Bush to send the regulations back to the drawing board, where they might at least be simplified and their costs reduced.
But Bush also wants to be a man of his word. He repeatedly promised not to move his lips differently after the election than he did before. And herein lies the rub: While candidate Bush said very little about privacy, he did make one rather extraordinary statement. Asked by The Associated Press about Internet privacy, Bush made a sweeping response: "I believe privacy is a fundamental right and that every American should have absolute control over his or her personal information." That certainly would seem to align him with the supporters of these new medical privacy regulations.
In addition, polls show that the overwhelming majority of Americans are anxious to have their privacy protected, not only from the traditional enemy of privacy, Big Brother, but also the leading recent violator, Big Bucks. So what's a president to do?
We all would be the beneficiaries if the regulations as currently constituted were not allowed to go into effect until they are subject to an expeditious and thorough trimming and simplification. For instance, instead of demanding that doctors' offices, clinics
and hospitals keep track of every use someone makes of information they initially released for a legitimate purpose, penalties should be imposed for the misuse of this information. Instead of requiring that health providers make contracts with all others they deal with -- to ensure these parties protect the information released to them -- each entity should be responsible for its own affairs. And while patients should be allowed to see their medical records and attach their comments, they should not be allowed to demandthat doctors "correct" the records.
Granted, medical privacy is a complex matter, but surely one could find a way to avoid having to wade through hundreds of pages of regulations with a specialized lawyer at your side.
With some rigorous and judicious editing of the new regulations, Bush could reduce the burden on business and maintain the main thrust of these badly needed privacy-protection regulations.
He then could return to his message of the week -- whatever it may be.
Amitai Etzioni teaches at George Washington University. A member of USA TODAY's board of contributors, he is the author of The Limits of Privacy and, most recently, The Road to the Good Society.