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Gallup Survey Finds Americans' Concern
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.

Survey Results

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 by researchers.

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 expressed views."

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 Freedom Watch.