Warning on abuse of baby DNA data

DNA samples of about two million Kiwis should be destroyed or transferred to a secure authority to avoid possible abuse from the dizzying pace of technology, the Privacy Commission says.

The DNA samples taken from a heel-prick test of babies born since the late 1960s is "banked" indefinitely as part of the National Screening Unit's Newborn Metabolic Screening Programme.

Originally intended to check for childhood diseases, the samples have also been used in paternity cases and to identify crime victims.

But Privacy Commissioner Marie Shroff has cautioned that the indefinite retention of heel-prick blood samples "presents risks for the programme's participants and potentially the programme itself".

In a submission to the Health Ministry, Ms Shroff said the "dizzying pace" of technology meant the blood samples could also be used in genetic screening for employment or criminal purposes.

The DNA derived from blood samples, like those in the collection, was the "ultimate marker of identity", she said.

"The status quo, where a vast collection of blood samples is being held well beyond the expiry of the purpose for which it was collected, is not supportable."

Ms Shroff said that improving technology meant dna testing was now faster, cheaper and more certain. "Any given blood sample is effectively a rich store of information, not only about the subject, but also about his or her relatives.

"There are also legitimate public concerns about the use of genetic screening for employment and criminal purposes, not to mention paternity."

About 60,000 babies are screened for 28 disorders each year, with about 45 affected infants identified.

The Health Ministry is now reviewing the programme's policy options, and a decision was expected by early to mid next year, a spokesman said.

Ms Shroff said she agreed with most of the draft ministry policy proposals initially outlined, but offered seven further recommendations. They included improving the screening processes for new disorders, gaining written consent from parents for sample research, the creation of a guardianship group to consult on ethical decisions, and legislation that "locks in" policy decisions for the dna collection.

"It should be straightforward for an individual to obtain his or her [heel-prick] card," Ms Shroff said. "In essence, if the cards are to be kept, they must be looked after."

The screening programme has reviewed the retention period several times in the past 15 years, and it has always been decided to continue to retain the cards indefinitely. Families can request their children's samples to be returned to them at any time.

The ministry said no cards had been used for population research and all cards were issued through appropriate consent or court orders.

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