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IHF Hosts Roundtable Discussion of Patients' Rights

January 4, 2001

On November 18, 2000, the Institute for Health Freedom (IHF) hosted a roundtable discussion to educate women legislators about patients' rights issues. The discussion took place at the annual meeting of the National Foundation for Women Legislators (NFWL) in New Orleans. The meeting was well attended by state legislators from across the country, as well as by representatives from other organizations, such as the American Red Cross.

Will New State Laws Protect Patients' Medical Privacy?

Two speakers expressed their views on health care issues important to Americans, and then legislators and others joined the discussion. IHF president Sue Blevins started the meeting by presenting the results from the recent Gallup survey (commissioned by IHF) on medical privacy. She explained that 78 percent of respondents report that they are very concerned about the confidentiality of their medical records.

Blevins next gave an overview of how the federal Health Insurance Portability and Account-ability Act of 1996 (HIPAA) could affect state laws regarding medical privacy. She noted that if any state law reads "nothing in this law shall preempt HIPAA," then that particular state law is meaningless in terms of protecting privacy. It can't truly guarantee medical privacy because according to proposed federal medical privacy regulations mandated by HIPAA, many third parties would have access to patients' medical records without their consent.

"Information" Includes Genetic Data

Blevins also stressed that according to the proposed federal medical privacy regulations, the definition of medical information includes data collected in any medium or form. It would include genetic information collected in sperm, blood and body- tissue samples. [Since this roundtable discussion took place, the final federal medical privacy rule has been released. The final rule does not necessarily offer privacy protection for the procurement and banking of sperm, blood and body tissue: See page 82477 of the final federal medical privacy rule, which was published in the Federal Register on December 28, 2000.]

To that end, genetic privacy is going to be an important patients' rights issue in the coming years, noted Blevins. She explained that Oregon passed a law in 1995 recognizing individual ownership of their DNA, but the law has been weakened and there are efforts to overturn it altogether. The question of who owns your DNA is going to spark a lot of debate, she noted.

Informed Consent Deserves Continued Protection

Barbara Loe Fisher, president of the National Vaccine Information Center, next addressed the issue of informed consent, especially as it relates to vaccines. Fisher explained that many parents aren't being adequately informed about possible vaccine risks. She noted that the ethical concept of informed consent is one of the great moral principles to emerge from the last century and deserves our continued respect and protection. "Once the law turns away from asking the individual to engage in informed, voluntary risk taking and becomes a law which demands forced risk taking, the confidence and trust of the people will erode in the law and in the institutions and individuals promoting and enforcing that law," Fisher said. She also pointed out that "Educated health care consumers find that they are prevented from making informed, voluntary vaccination choices by [mandatory state vaccine] laws now equating chicken pox with smallpox and hepatitis B vaccine with polio."

Fisher stressed that the call for reforming vaccine polices has never been about telling people not to vaccinate, but rather about "better defining and communicating vaccine benefits and risks so that children can be protected from both infections and vaccine complications. . . . It is time to stop dumbing down the vaccine benefit and risk discussion by simplistically labeling people as anti- vaccine or pro-vaccine in order to deflect attention from our duty to protect the health and well being of all children."

More Than 200 New Vaccines Being Developed

Fisher informed the attendees, "As state legislators, entrusted by the people to protect their well being, you are going to be approached by special-interest groups in the coming years to mandate many of the more than 200 new vaccines being developed by industry and government. You are going to be asked to vote to create and strengthen electronic medical records databases that include vaccine- tracking registries that assign a unique health care identifier to babies at birth without their parent's informed consent to facilitate enforcement of new vaccine use. The argument will always be the same: the state should require all citizens to risk vaccine injury because the minority harmed by the vaccine will be outweighed by the benefits to the majority. In short, the ends justify the means," she said.

Utilitarian Ethic vs. Nuremberg Code

Fisher also pointed out that, "Before World War II, U.S. Supreme Court Justice Oliver Wendell Holmes applied a utilitarian ethic to allow state health officials to justify the forced sterilization of a mentally retarded woman, saying, `The principle that sustains compulsory vaccination is broad enough to cover cutting the fallopian tubes.' A decade later, physicians in service to the German state would implement the utilitarian ethic in its most extreme and tragic form during forced medical experiments on humans." She continued, "Utilitarianism was discredited as inherently immoral by the judges of the Nuremberg Tribunal when they issued the Nuremberg Code, which essentially defined the right to informed consent to taking medical risks as a human right," said Fisher. "The first principle of the Nuremberg Code has become the gold standard in modern bioethics that governs medical decisions we make that could harm us or our children, whether we are going in for an operation in a hospital or taking part in a clinical trial. That principle is, `The voluntary consent of the human subject is absolutely essential.'"

Deborah Grady, IHF Associate Policy Analyst, also participated in the roundtable discussion. She pointed out that when obtaining informed consent, the information should be provided to patients in a language they can understand and that it should occur at a proper time and place. Otherwise, what appears to be informed consent on paper is not truly informed consent.

In all, it was a lively discussion of important topics that affect nearly each and every American. IHF was pleased with the number of legislators that attended and their interest in the issues.

This article was originally published in the November/December 2000 issue of Health Freedom Watch, the bimonthly watchdog report published by the Institute for Health Freedom.

The first principle of the Nuremberg Code is "The voluntary consent of the human subject is absolutely essential."