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