Gallup Survey Finds
About Medical Privacy Runs Deep
Americans by a large majority are concerned about
others having access to their medical records without
their consent. That was the major finding of a Gallup
survey on medical privacy commissioned by the Institute
for Health Freedom (IHF) and released September 26.
The survey results were released to the media and public
at a well- attended press conference at the National
Press Club in Washington, D.C. Three panelists also
commented on the poll and current medical privacy issues.
The Gallup survey of 1,000 adults nationwide found that
78 percent say it is very important that their medical
records be kept confidential. According to a majority
of respondents, no one should be permitted to see their
records without permission. Ninety-two percent oppose
nonconsensual access by government agencies; 88 percent
by the police or lawyers; 71 percent by doctors (other
than ones given permission by the patient); and 67 percent
Public Overwhelmingly Supports Genetic Privacy
The survey included two questions about genetic privacy.
One asked whether doctors should be allowed to test patients
for genetic factors without their consent. Only 14 percent
of respondents would permit such testing; 86 percent oppose
it. The other question asked whether medical and government
researchers should be allowed to study individuals' genetic
information without first obtaining their permission.
Over nine in ten adults (93%) feel medical and government
researchers should first obtain permission before studying
their genetic information.
Consent Is a Human Right
"The Gallup survey results show that individuals do not
want government agencies or private groups accessing their
medical information without their permission. Consent
has always been viewed as a fundamental human right, not
just in this country, but worldwide. This Gallup survey
confirms that Americans strongly support that right when
it comes to determining who can access their medical and
genetic information," said Sue Blevins, president of the
Institute for Health Freedom.
Most Oppose Medical ID Plan, But Few Know About It
When asked whether they are aware of a federal proposal
to assign a medical identification number, similar to
a Social Security number, to each American, only 12 percent
said they had heard anything recently about it. College-
educated adults (16%) are more likely than those with
less than a college education (8%) to be aware of the
proposal. Regardless of their knowledge about it, however,
an overwhelming majority (91%) oppose the plan.
Federal Mandate for Medical ID Numbers
At the news conference Charlotte Twight, professor of
economics at Boise State University who has written extensively
about medical privacy law, commented: "The Gallup poll
released today confirms what thoughtful Americans long
have understood: that privacy--especially privacy regarding
personal medical data--is central to people's sense of
identity and independence, and that they do not want such
information made available to others without their consent.
. . There no longer is any doubt that the public is vitally
concerned about medical privacy; the challenge now is
how to make policymakers respect the public's clearly
Although federal funding for the medical ID plan has
been put on hold, Professor Twight stressed, "The public
first must understand that the national electronic database
of personal medical information and assignment of a
unique health identifier are mandated by existing statutory
law. They are not mere `proposals.' They will be--and
legally must be--implemented unless the HIPAA [Health
Insurance Portability and Accountability Act of 1996]
provisions mandating them are repealed."
Can Patient Records Be "De-Identified?"
Another panelist discussed privacy as it relates to medical
research. Twila Brase, president of the Minnesota-based
Citizens' Council on Health Care, stressed that "Over
the last several years policy papers have repeatedly pushed
unconsented disclosure of patient records for medical
research as a societal obligation of patients. This lies
in direct opposition to the Nuremberg Code requirement
of patient consent for research."
Brase also pointed out that policymakers have recently
suggested that researchers could "de-identify" patient
data or use Institutional Review Boards (IRBs), or ethics
boards, to soothe the public's concern about medical
privacy. "But there are problems both with de-identification
and institutional review boards," Brase stressed.
"The problem with de-identification, according to
[an] Institute of Medicine report, is that it is impossible
to guarantee confidentiality. Patients can be identified
by inference when one de-identified patient database
is linked with another non-de-identified, non-patient
database. In addition, holders of the data can be lax
with requirements to de-identify data, as has been the
case with some government agencies. And although patient
identification is removed, someone somewhere usually
holds the key or the code to permit re-identification."
Brase also pointed out that "Supporters of the institutional
review board process say IRBs can objectively review
research projects to balance the societal benefit of
the project against privacy concerns. However, the IRB
process not only waives the privacy rights of citizens
without their knowledge, it has also received sharp
criticism . . . A February 1999 GAO [General Accounting
Office] report says IRBs are ineffective for protecting
medical privacy. While patient data may have become
an important commodity to researchers and insurers,
dismissing the need for patient consent puts the public's
trust at risk." Brase continued, "While medical research
is a valuable endeavor, I venture to say that a crisis
of confidence in medical privacy is a price our country
does not want to pay. The [Gallup] survey shows a clear
public desire for medical confidentiality. Citizens
have resolutely stated that they must give explicit
consent prior to disclosure of their personal health
information. Medical research--in any shape or form--is
not so lofty an activity that it can afford to disrespect
the rights of patients . . ."
Who Should Determine Medical Privacy Levels?
Tom Miller, director of health policy studies at the Cato
Institute, asked the critical questions: "What sort of
trade- offs are [consumers] willing to make in sharing
medical information with other parties for other kinds
of benefits? And what mechanisms will ensure that it's
individual consumers that get to make those choices .
. . ?" Miller discussed principles for medical privacy
reform. "We need some contractual solutions that would
give individuals the power to choose [more] privacy, or
less privacy, without requiring full privacy for everybody
or for nobody." He pointed out that contracts are superior
to rules that are dictated by politicians, bureaucrats,
or judges, and they are much more sensitive to the wide
range of individual preferences that people have with
regard to privacy.
During the question-and-answer session, an audience
member noted that because of fear for their privacy,
some patients are asking doctors to lie in their medical
records. Consequently, those medical records are inaccurate
and clearly are not reliable sources for medical research.
The Gallup survey titled "Public Attitudes Toward
Medical Privacy" can be viewed in its entirety at the
IHF Web site (www.forhealthfreedom.org/Gallupsurvey).
This article was originally published in the September/October
2000 issue of Health