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.