Protecting Your Medical
At a recent workshop for think-tank
leaders, I asked a group of free-market advocates, "How
many of you would want to be cloned?" Only one out of
some seventy-five answered in the affirmative. When asked,
"How many of you would support a ban on cloning?"
only three individuals raised their hands. This informal poll
posed an interesting dilemma: How does one prevent being cloned
if there is no ban on cloning or prohibition on the collection
of genetic information?
Part of the answer lies in
medical privacy. One way to ensure that genetic information
is not used without permission is to allow individuals to
keep their medical records, including genetic information,
private. That means Americans should not be forced to use
a "unique health identifier." The Health Insurance
Portability and Accountability Act of 1996 allows the federal
government to create a new electronic database and to record
in it a unique number for each American. The identifier would
permit the federal government to tag, track, and monitor individuals’
medical records. Supporters tout it as an efficient way to
bill for health care services, standardize medical information,
and give doctors greater access to patient records in emergencies.
But the road to abuses of
genetic material runs through this bureaucratic mandate. The
database makes all individual medical information available
to the government. That could include patient tissue sample
data. The assumption is that only essential data will be collected.
But would it truly stay limited?
Consider an analogy. In order
to apportion electoral votes among the states, the Constitution
authorizes the federal government to conduct a census. All
Washington needs to know for that purpose is an individual's
name and place of residence. But census forms not only ask
gender, age, and ethnic group, they seek information about
how many bedrooms you have, how much you spend to heat your
house, and other questions that have no relevance to the allotment
of congressmen. The government and special interest groups
comb through the information looking for excuses to create
new programs, and businesses want the data for marketing purposes.
It can be expected that medical
data will increasingly be used for those purposes as well.
And useful medical research often requires access to the entire
medical history of many individuals. ("What percentage
of individuals over fifty years old had both ailment X and
As Dr. Bernadine Healy, former
director of the National Institute of Health (NIH) recently
pointed out, the patient identifier violates the fundamental
ethical principle of research involving human subjects: informed
consent. "Patients used in research must be informed,
must understand any potential risks and benefits, and must
voluntarily agree to participate," Dr. Healy says. "Patients
may not be coerced into participating in research, and may
not be deprived of care if they refuse. But with the federal
database, patients do not have the choice of participating
or not participating in research; all medical treatment becomes
Further, as the NIH budget
grows, its appetite for medical data will grow with it—meaning
the new database will get heavy use. Congress plans to increase
the agency’s FY 1999 budget by $1.24 billion to a total of
$14.8 billion—a 9.1 percent increase and $99 million more
than President Clinton requested.
Congress might also undercut
medical privacy through the Republican’s so-called "Patient
Protection Act." It would preempt thirty-five state laws
protecting the confidentiality of medical information. While
in some cases individuals might be better protected, in others,
a diluted federal law will replace strong state laws. That
is no way to protect patients.
Forcing Americans to share
their personal medical information strips them of their right
to privacy. As the ACLU’s legislative Counsel Solange Bitol
says, "Our laws are more protective of video rentals
and the books we check out from the library than they are
of our medical records."
Instead of regulating the
"protection" of medical information, Congress should
stop government information collection. Individuals could
then protect themselves with private contracts that would
state clearly whether patients permit the sharing of information
for biomedical research. There need be no conflict between
patient privacy and medical advancement. The key is the constitutional
protection of medical privacy.
By Sue Blevins. This article was originally published
in the Cato Institute's journal Regulation, Volume
21, Number 3, Summer 1998.