Australian Civil Liberties Union

Call to destroy state's 400,000 blood samples

Sunday Mail
29 June 2003

http://www.theadvertiser.news.com.au/printpage/0,5942,6669663,00.html

About 400,000 blood samples from every baby born in South Australia since 1980 are in storage as a genetic medical record.

Access to similar material by a detective using a search warrant in Western Australia proved a suspected case of incest.

However, it sparked a privacy outcry over the use of such material in criminal cases, resulting in the records kept at Perth Hospital being destroyed.

Australian Council of Civil Liberties president Terry O'Gorman has called for the South Australian samples to be destroyed to prevent them being used for criminal or insurance investigations.

"There is a huge genetic database in South Australia . . . and it is fundamentally wrong it could be used for law enforcement," he said.

"People will object to the idea that a test done on a newborn for medical reasons could be used later in life for other reasons."

The Neonatal Screening Test, also known as the Guthrie Test, was introduced to South Australia in 1966 but samples are in storage from 1980 onwards because of difficulty in identifying the earlier samples.

The future of the material is under review.

Women's and Children's Hospital acting head of chemical pathology Dr Janice Fletcher said it was vital to retain the material for about 50 years for reasons that included quality control.

"In the US they destroy them so mistakes cannot be checked but we keep them because we want to know if we got something wrong," Dr Fletcher said.

"We would not expect unauthorised use here because we have laws that allow police to take specimens from suspects."

Dr Fletcher noted that keeping the tests allowed doctors to go back and recheck samples as new medical tests became available.

"Three times in South Australia we have used new tests on old samples to diagnose a condition where a child has died and that has lifted a huge burden of guilt off the parents," she said.

"In a case in Victoria where a child vanished, the Guthrie sample was used to confirm the identity of remains which were found, giving the parents closure.

"We are not storing them for evil purposes or to become a police state – we store them for good medical reasons." The blood taken from the heel of newborn infants is used to check for about 30 medical conditions such as cystic fibrosis, often before any harm is done or symptoms are apparent.

About 1 in 800 babies is diagnosed by the test to have a condition that benefits from early detection and parents are given a leaflet explaining the test.

The blood, swabbed on to special paper, is kept at the WCH for about three years then transferred to the State Records Office with strictly limited access.

Parents can request that the cards and samples be used by researchers if approved by the WCH Ethics Committee on condition identification is removed.

Only three sets of parents have asked for the return of the cards in the past eight years.

The Australian Law Reform Commission has made a series of recommendations to increase the security of genetic material and the State Privacy Committee and departmental Ethics Committee are reviewing the situation.

Health Minister Lea Stevens is awaiting recommendations from the reviews.

The Human Genetic Society of Australia also has made draft recommendations in favour of keeping such material but under strict conditions limiting access.

Victim Support Service spokesman David Kerr said his initial reaction was that the samples could be used as a DNA database to solve crimes.

"However, on reflection, I think they should be destroyed because using them for other reasons would breach all sorts of principles," he said.