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PRESS RELEASES
April 20, 1999
Health Policy Group Alarmed that Nevada Legislation
Poised to Track "Defective" Kids May be Start of National Database
ST. PAUL, MINNESOTA--Americans should be alarmed by the Nevada
bill under consideration to create a system for tracking children
with birth defects, says Citizens' Council on Health Care (CCHC),
a Minnesota-based health care policy group.
"This bill labels children forever as "defective." It revokes
the family's right to private genetic testing and it strips away
the parent's right to refuse government research on their child.
If passed the legislation may be used as a precedent for other
states." said Twila Brase, R.N., CCHC's president.
"The most vulnerable will no longer be provided their Fourth
Amendment right to privacy from government intrusion into their
homes and lives. Health care professionals will be forced to
report on their patients. Mothers and babies will be entered into
the registry without knowledge or consent."
The Nevada proposal, A.B. 238, results from the Birth Defects
Prevention Act of 1998 signed into law by President Clinton in
April 1998. The law encourages states to set up birth defect
surveillance systems and makes $70 million federal dollars
available for the purpose of registry development and
implementation.
According to the Act, the children must be tracked by race and
defect using birth certificates and medical records. Parent and
patient consent requirements are not mentioned in the Act.
"This is discriminatory and intrusive. Physicians have a duty
to protect the confidences of their patients and governments have
an obligation to ask for permission", Brase maintains. "If A.B.
238 passes, physicians must either act against their medical
ethics or redefine ethics to fit government directives."
"I fear we are slipping precipitously toward eugenics in
America even as we abhorred it in Europe. This is not how we
should be treating our children."
As recently as 1997, eugenics has received sharp criticism. In
August of 1997, Sweden's largest newspaper reported on a
sterilization program which ended as late as 1974 for young women
judged promiscuous, rebellious, of low intelligence or mixed
blood. It was, according to a Washington Post article, a program
grounded in "the science of racial biology" and a sense of
"embodying progressive and humane values of statehood."
A.B. 238 specifies that the state health department and the
University of Nevada School of Medicine maintain a statewide
system to collect information on birth defects and stillborn
babies. The hospital or obstetric center must maintain a list for
the health department containing the names of children age 7 years
and under who have a birth defect and mothers who have stillborn
babies.
Laboratories are required to release the results of blood
testing and health care facilities are required to release medical
records to state registry officials. The bill defines birth
defects broadly as "any structural or chemical abnormality present
in a child at birth."
How birth defect in defined is critical, says Brase. "There is
nothing in the bill limiting the expansion of a birth defect to
eventually include anything that makes a person less than perfect.
Once a registry exists, we believe researchers will try to expand
it to adults, to mental illness, to Attention Deficit Disorder, to
anything that it not socially desirable."
Proponents, including the March of Dimes which made state
surveillance systems a top priority in 1994 claim that the
registry will be used for prevent birth defects in the future.
"How?", says Brase. "By denying care to a mother who refuses
an abortion for her birth defective child? By denying marriage
licenses to those with less than desirable genetic tendencies? By
denying insurance for pregnancy coverage to those at risk for
defective children?"
"The future becomes frightening when government officials
force themselves into the personal lives of law-abiding private
citizens. We are deeply concerned."
The Senate Health Resources Committee is scheduled to hear
A.B. 238 on Friday, April 23, 1999. A.B. 238 has already been
approved by the Nevada Assembly.
Citizens' Council on Health Care is a St. Paul,
Minnesota-based national health care policy resource specializing
in health care reform, patient choice and professional practice
issues, and medical confidentiality.
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Citizens' Council on Health Care
1954 University Avenue West, Suite 8, St. Paul, MN 55104
Phone: 651.646.8935 / Fax: 651.646.0100, e-mail
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