Since the 1960s, public health departments around the globe have tested hospitalized newborn babies for serious genetic disorders, generally without the parents' knowledge or consent. Many departments save that DNA, tiny spots of blood on paper. Now questions have arisen about whether law enforcement officials should have access to those samples. In other words, should babies have a right not to self-incriminate themselves?
In the United States, an Institute of Medicine committee recommended that DNA banks created for medical and research purposes (such as newborn screening banks) not be used for forensic purposes. But, in other countries, courts have handled fascinating cases on route to setting policies.
Controversy arose in Sweden when the authorities in charge of the newborn screening samples allowed access to police without an order from a court. In 2003, Sweden's Foreign Minister, Anna Lindh, was fatally stabbed in a department store. Police investigators did not find a match between the DNA left behind by the assassin and the national criminal database. So they turned to another DNA database, the PKU biobank, which has collected blood samples of all newborns in Sweden since 1975 as a medical resource. The police arrested a man who had been identified by the newborn screening DNA bank.
Afterwards, the National Board on Health and Welfare (a Swedish governmental agency) investigated the delivery of the samples to the police and found that the Biobanks in Medical Care Act gave an individual "absolute control" over the future possible use of a saved sample. The Board criticized the biobank for being "more compliant with the police than was necessary" and for not trying the question in court. The Board suggested that the privacy concerns in the Biobanks in Medical Care Act should have precedence over the confiscation of samples for use in forensics.
Sweden went one step further and allowed people to have their newborn samples destroyed. When law enforcement officials sought to obtain the names of all people who had taken their samples out of the biobank, a court refused, since the removal of samples was not proof that the people were guilty of anything.
In Western Australia, the police obtained a search warrant allowing them to seize children's newborn screening cards from the hospital after the mother refused to let her children undergo blood tests in an incest case. The test results helped lead to a successful conviction. At the time, there were no laws protecting the database. Public concern that participation in the program would decrease led the Western Australia Health Department to adopt a policy requiring the cards to be destroyed after two years. Other Australian states, including New South Wales and Victoria, have subsequently adopted Memorandums of Understanding limiting police access of newborn screening blood samples. The New South Wales policy allows access to screening cards only to identify human remains or to identify samples from a crime scene that police believe are from a missing victim. The police are required to make a reasonable effort to contact the next of kin or a parent to obtain consent except when doing so would be impracticable or would compromise an ongoing investigation. The Victoria policy requires specific court authority through a court order.
Newborn screening programs serve an important health purpose. Infants identified with the disease PKU can be treated, staving off mental retardation. But access of other institutions to the samples can undermine faith in the program. Newborn screening samples should be destroyed two years after collection unless the parents are told of all possible future uses and then consent.