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By AMITAI ETZIONI
I cannot help but wonder why so little is heard from the public as Congress is about to tackle the issue of medical privacy.
Congress committed itself to act to protect our medical records in August. Indeed, lawmakers went so far as to state that if they do not move by Aug. 21, Health and Human Services Secretary Donna E. Shalala can promulgate such a law on her own.
But reliable sources in Washington (three members of Congress and one HHS official) hold that, given public indifference on the issue, neither Congress nor HHS will act.
To judge by press stories, most people are alarmed by occasional reports of unauthorized use of medical information by some rogue individual, like the medical student in Colorado who sold medical records of patients to malpractice lawyers. Or in Newton, Mass., where a convicted child rapist gained access to nearly 1,000 patient files and drew on them to make obscene phone calls to young girls.
But these violations of privacy are rather rare, already a violation of existing institutional policies and relatively easy to prevent.
At the same time, most people seem unaware of the enormous scope of authorized abuse of private medical information. Americans seem not to realize that their records are an open book, given that no federal legislation prevents anyone from disclosing who has cancer, takes anti-depression medications or has had an abortion.
While the law heaps rather severe penalties on shops that disclose the videotapes you rent, little protection exists against health-insurance companies that share your medical records with Internet information brokers or against brokers who sell this information to banks, employers and all comers. They have quite an incentive for trading in your records: The going price is about $400.
True, the states have some privacy-protection laws. But the public is largely unaware that these laws exist only in some states, and that in no state are these laws comprehensive. Most important, private medical information now flows on the Internet and across state lines, easily circumventing state laws.
If you feel reassured by the consent forms you sign when you visit physicians and hospitals, look again. Although these forms do ask your permission to disclose medical information to health insurers, note that you have no choice in the matter unless you are a multimillionaire and plan to pay for medical care out of pocket. No consent no reimbursement. Also, read the forms carefully. They set no limits whatsoever on what a health insurer may do with the personal information you provide.
“But,” you may ask, “if medical files are truly that transparent, why don’t I know of anyone who was fired or denied a loan because of their medical condition?” The main reason is that neither employers nor financial institutions must, as a rule, explain why they refuse to hire you or extend you credit or grant you the true reason.
As part of pre-employment medical tests, many employers now screen the blood sample you must provide for venereal diseases and pregnancy. Black applicants also are tested for the sickle-cell anemia trait.
Most recently, genetic tests have been added. A 1996 study conducted by Harvard and Stanford universities found 206 cases of genetic discrimination against asymptomatic individuals. They suffered loss of employment, loss of insurance coverage or ineligibility for insurance. Another survey found 550 people who were denied jobs or health insurance because of a genetic predisposition to certain illnesses.
Those good citizens who demand that Congress act will discover that they cannot make heads nor tails of the draft bills before Congress.
Just one example: a banking bill that contains an amendment concerning the sharing of medical information but that would apply chiefly when a bank purchases a health insurer. One version of the bill presented as a giant step in favor of privacy protection would ban the sharing of information for any purpose other than “research.” Critics argue that the bill actually would diminish privacy because “research” would be so loosely defined as to open the door to all kinds of snooping.
So what’s a concerned citizen to do? First, comprehensive legislation, such as a law that flat-out prohibits health insurers from passing information to third parties, must be the objective in Washington.
In the private sector, corporations that insure their own employees must be required to erect a firewall between their medical-records departments and the departments involved in hiring, firing and promotion decisions. In medical offices and hospitals, furthermore, patients must demand new consent forms that allow the release of information but only to health insurers and only for purposes of reimbursement.
Finally, we must watch the marketplace for a piece of plastic that, if purchased by enough people, could play a surprisingly large role in protecting medical privacy. The plastic card, not larger than a credit card, is known as a smart card. It can contain our medical records and allow us to carry them in our pockets. With such cards, we can determine who may display our information on their computers and when. Further development and availability of these cards awaits greater demand for them.
Amitai Etzioni is a professor at George Washington University in Washington. He can be reached at [email protected].
