Does Government Need to Know if Grandpa Curses?
Heritage and ACLU Say NO!
July 1, 1999
Under new rules proposed recently by a federal health-care
agency, information on millions of homebound patients
would be compiled and disseminated without their consent.
The proposal brought immediate rebuke from the Heritage
Foundation and the American Civil Liberties Union (ACLU).
Heritage Foundation Responds
"Americans are accustomed to thinking the health information
they share with their doctors remains confidential," noted
Robert Moffit of the Heritage Foundation. "But under a
new rule proposed by the Health Care Financing Administration
(HCFA), the powerful bureaucracy that runs Medicare, such
information would also be shared with the federal government-without
Moffit went on to explain the new rules: "Under the
pretext of regulating prices and assuring `quality'
service, HCFA would force 9,000 home health care agencies
to collect and report sensitive personal information
about millions of [mostly elderly] homebound patients.
The information, which would be transmitted to a federal
database, would include a patient's medical history
and personal characteristics, such as race, ethnicity,
living arrangements, as well as financial, behavioral,
and psychological profiles."
Personal Data Collected
"The detailed record would note whether the patient has
expressed `depressive feelings,' a `sense of failure,'
`thoughts of suicide,' or had used `excessive profanity'
or made `sexual references," stressed Moffit. He explains
that this personal information eventually would also be
made available to state governments.
Government officials contend that data collection is necessary
to crack down on Medicare fraud and to assess the quality
of care. But the ACLU points out that the database will
be used to do "outcomes" research on home-care patients.
"HCFA has yet to explain how any of these [data collection]
objectives can justify overriding the Fourth Amendment
of the U.S. Constitution, the requirements of medical
ethics, and the federal regulations on research involving
human subjects. Research that uses fully identified information
requires fully informed consent," warns the ACLU in a
recent press release.
The ACLU also points out that "Because HCFA is unwilling
that anyone be able to opt out of this date collection
scheme, it has no plans to get true consent. The patient
or client must `consent' as a condition of receiving
care." That's the care they prepaid for with their Medicare
payroll taxes during their working years.
Solution for Privacy?
Moffit correctly argues that Congress could stop this
potential abuse of seniors' right to privacy by reforming
Medicare. He suggests the best model for reform would
be the Federal Employee Health Benefits Program (FEHBP),
"a patient-driven system of competing private health insurance
plans enjoyed by members of Congress and their staffs,
federal workers and federal retirees."
The Medicare/FEHBP proposal could be used to help secure
patients' privacy if-and only if-it allows seniors to
pay privately for their health care. Nothing prohibits
members of Congress and federal workers from going outside
their health plans to pay privately for care. Seniors
deserve the same freedom.
Allowing seniors to choose their own health plans
and contract privately is the best way to prevent Uncle
Sam from collecting information on the homebound elderly.
This article was originally published in the May/June
issue of Health