DNA Databank Danger
DNA Databank Danger
21 November 2001 DNA Databank Danger
A huge database of DNA from almost every New Zealander born since 1969 is being held in storage without the knowledge of most donors and with no adequate control over its security and the use it can be put to, Green Party Health Spokesperson Sue Kedgley said today.
Nearly all infants over the last 30 years have been given a heel prick test, also known as a Guthrie test, to test for various congenital abnormalities that can be treated, if detected early enough.
"The tests obviously serve a valuable function in screening babies, but the present system of storage and retrieval is open to abuse and misuse," said Ms Kedgley.
In France and in most programmes operating in the United States, the blood samples are destroyed after the completion of testing.
Not so in New Zealand, where the samples are stored indefinitely, even after the original donor has died. In cases where the donor is dead, the samples become the property of the National Testing Centre.
"There is no justification for keeping the samples after the child has reached adulthood. The creation of a virtual databank containing the DNA of all New Zealanders raises serious legal and ethical questions.
"Medical experts contend that the DNA material is useful for research purposes, but to what end? What safeguards have we that such material cannot be used in GE experiments or for genetic testing," she asked.
Only in the last couple of years has it even been necessary for doctors to obtain parental consent for the taking and storage of their baby's blood sample, meaning up to a million New Zealanders have had their DNA recorded without their knowledge.
Recently, a sample was released by the National Testing Centre and used to identify the parenthood of a dead child, against the wishes of the mother who hadn't even been informed about the storage of her child's blood sample.
The practice of blood sample storage appears to contravene privacy legislation stating that people must be informed of information gathered about them.
"The Privacy Commissioner is sufficiently concerned about the practice to mount his own investigation. What I am calling for is public and parliamentary debate about the issues involved," said Ms Kedgley.