Part II. Your Medical Records at Risk, an article by Robyn E. Blumner, a
columnist, lawyer and director of the Florida ACLU, in the 10/28/96 St.
Petersburg Times:
In the same way that credit information companies catalog and control financial
profiles on each of us, these new medical information firms will be marketing
out most intimate bodily secrets. The same problems of abuse and mismanagement
that plague our credit reports will no doubt similarly appear in our medical
profiles.
Although the legislation does direct the secretary of Health and Human Services
to write regulations protecting privacy within two years IF CONGRESS FAILS TO
DO SO, the National Committee on Vital and Health Statistics, whose job it is
to collect information and conduct statistical analyses on the state of health
in America, is the agency charged with advising the secretary. According to
Beverly Woodward, chairwoman of the Privacy Committee for the ACLU of
Massachusetts, "The committee, which will be composed largely of statisticians,
epidemiologists, health services researchers and experts on computerized
medical information systems, is ill-suited for protecting the patient's rights
to privacy and medical records confidentiality."
If the administrative simplification law is not repealed, Congress should at
least act to provide basic privacy protection. Patients should be given
complete information about how their records are stored and who has access to
them. No records in digital form should be accessible without written consent
by the patient and that consent shouldn't be subject to coercion. In other
words, insurance companies and HMO's should not be able to withhold medical
treatment until patients consents to making their medical records available to
health information companies.
In response, U.S. Rep. Jim McDermott, D-Washington, has introduced a bill
titled "The Medical Privacy in the Age of New Technologies Act." As the name
suggests, it would provide some legal protection to patients. The bill
requires that specific written consent be obtained before medical records could
be released, and prohibits the dissemination of medical records by a third
party, such as a medical information firm, WITHOUT EXPRESS PATIENT CONSENT.
The legislation would also institute a system of stratifying records based on
their sensitivity so that patients could widely release certain records, such
as their allergies to medications, and hold private others, such as their HIV
status or whether they have had an abortion. These basic protections would go
a long way toward limiting the most egregious abuses.
In this information age, great data bases of personal information are being
developed that will expose each of us to extraordinary scrutiny. Among other
things, these repositories already collect and collate our credit history,
driving record, buying habits and choice of neighborhoods. Such information is
a valuable commodity eagerly bought by businesses anxious for an insider's
vantage point in determining whether we qualify for a loan, receive certain
advertising promotions or whether we would be a good auto insurance risk. With
the new Administrative Simplification law, add medical records to that list.
Armed with such personal details, who knows how our bodily dents and defects
will be used against us in the future. Congress should fix this law before we
all find out.
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