Across the nation some state-mandated newborn screening programs have seen hospitals, birthing centers and midwives drawing blood from each newborn baby's heel without parental consent. The purpose has been to test infants for a number of birth defects.
According to the Austin American-Statesman, in 2002 the Texas state health department began keeping the blood samples indefinitely for medical research. Parental consent is not required by law and hospitals do not typically try to obtain consent from parents. If parents happen to know about this practice in advance they can only opt out for religious purposes.
Under the health department's policy, the samples can be used by the medical community for things like cancer research, birth defects studies and calibration of lab equipment, said Doug McBride, spokesman for the Department of State Health Services.
Texas has been screening newborns blood since 1965.
. . .the state now checks for 27 different health conditions — ranging from a gene that can cause severe mental disability to sickle cell anemia.
The blood samples are stored with a code number in one place that can be easily matched to names stored in another place. The state claims that it does not release this “de-identified” information to researchers without parental consent.
Proponents of the practice explain that in knowing the genetic fingerprints of disorders, researchers can suggest ways to prevent birth defects.
Parents and medical privacy advocates are concerned about how these identifiable genetic fingerprints could be used in the future by the state or by insurers or employers to discriminate against certain people.
James Harrington, director of the Texas Civil Rights Project, said that although his three grown children were all born in Texas, he had no idea of the practice and was "stunned by the whole thing. . . "I believe it's a violation ... of unlawful search and seizure," he said. "We're dealing with the most confidential information we have, and (for the government) to say, 'Trust us,' ... I find it impossible to believe."
While some medical ethicists see no problems with the way the state gathers these samples from infants without parental consent, others argue that it’s a matter of trust.
"Even if something is a social good, there can be a social harm," said Dr. Howard Brody, director of the Institute for the Medical Humanities at the UT Medical Branch at Galveston. "It's important to have trust in the scientific community ... and the more things that are done without consent, the more trust goes down."
According to Twila Brase, a nurse who is president of the Citizens' Council on Health Care in St. Paul, Minnesota, “blood from 52,000 Minnesota children has been used for genetic research without their parents knowing.”
The Citizens' Council on Health Care has won a ruling ordering the state of Minnesota to get informed consent from parents to store that blood and the group is launching a national outcry against the policy.
According to The Citizens' Council on Health Care, the final Economic Stimulus bill permits Americans’ personal health information to be sold for research and Public Health purposes without patients’ consent.
“This bill is very misleading because while it promises to outlaw the selling of data, the exceptions to the rule are huge and allow Americans’ personal health data to be exchanged and sold for research and public-health purposes without patients’ consent,” says Sue Blevins, president of the Institute for Health Freedom.