Third parties increasingly access material from blood bank DNA

By SCOTT MacLEOD

A blood bank holding genetic material from 1.9 million people is giving an increasing number of samples to "third parties".

The National Testing Centre in Auckland has been storing baby blood for 30 years, and has genetic material from half of all New Zealanders.

Few know their blood samples have been stored with barcodes and personal details such as breast-feeding habits.

The centre, owned by the Auckland District Health Board, keeps the blood indefinitely despite Western Australia destroying its samples after two years and France within weeks.

Figures obtained by the Herald show the number of times the samples are accessed by "third parties" has leaped from from just one in 1995 to a projected 1000-plus this year.

Most of the surge comes from parents wanting their children's samples.

Green MP Sue Kedgley, who has been pushing for tighter laws on the collection of human DNA, yesterday said she was "gobsmacked" by the access figures.

"Most people don't know their blood is in a bank that other people can access. They haven't given their consent for it to be taken."

In a report written in September and obtained by the Herald, then-privacy commissioner Bruce Slane pushed for an "urgent" review of the storage procedures. He was "uneasy" that access to the blood was getting cheaper, easier and more frequent.

There was "no legal protection for the samples against access by third parties or against future uses".

The blood is obtained within 10 days of birth to test for seven types of disorder. The test is known as the Guthrie test after an American doctor, Robert Guthrie, who developed a cheap method of screening blood samples from newborns for medical disorders. Thirty to 35 babies test positive for the disorders of 55,000 samples taken each year.

The director of the newborn screening programme, Dianne Webster, said the initial reason for storing the blood indefinitely was to allow auditing.

In recent years the bank had proved useful for parents who had lost children to disease and wanted to check if there was a family history.

Dr Webster said there was only one instance in which police accessed the blood bank without parental consent - when a baby's body was found in an incinerator eight years ago. Figures show 775 of 823 accesses last year were by parents who asked for their children's samples.

The remainder fell into the categories of family health (46), forensic (1) and civil court order (1).

The chair of the Newborn Screening Advisory Committee, Pat Tuohy, said people could request their samples, as could their guardians, but anyone else needed consent or a court order.

Dr Tuohy said the issues would be addressed at a meeting on December 11.

The Guthrie test

* A heel-prick sample of blood is taken from a newborn baby.

* Four splotches of blood are placed on filter paper.

* Name, age, gender, birthweight, gestation age, breast-feeding, parent details, etc, are recorded.

* Mailed to the National Testing Centre, Auckland.

* Blood tested for cystic fibrosis and six other disorders. Details stored on computer.

* Card/blood stored indefinitely with a barcode.