Personal data in worrying territory
Would you dob your kids in to the police if you suspected they’d committed a serious crime?
It’s a question worth pondering as we reveal today how a national database containing blood samples from more than two million Kiwis can be accessed by police, when all other investigative avenues have been exhausted.
For nearly 50 years, the National Screening Unit has taken blood spots from newborns and tested them for invisible killers such as cystic fibrosis, debilitating diseases like congenital hypothyroidism, and dozens of other metabolic conditions.
Parents readily acquiesce to the test when informed of the laudable goals of the programme: early detection and possible prevention from life-threatening illness.
These blood samples are stored indefinitely, unless parents specifically request their return, and can be scrutinised decades later.
There are strict laws governing how the samples can be used. In 2015, researchers were granted access to test 154 samples to seek a cure for a rare disorder, and other studies are in the pipeline.
In exceptional circumstances the police can, and do, also apply to access the data. In missing persons cases, body identification after the Christchurch quakes of 2011, and occasionally in the pursuit of a criminal.
In the Scott Watson murder case, police were able to match blood spot samples taken from Olivia Hope and Ben Smart to DNA found at the scene.
Crucially, parents we spoke to weren’t informed of this possible eventuality, however remote, when they agree to hand over the blood of their newborn. Scott’s father has his doubts that this was done in the honest pursuit of justice.
Judith Furlong, a staunch critic of police over the way they have handled her daughter Jane’s murder investigation, could be forgiven for not trusting the police to always have the best of intentions. She told me she’d only learned recently been informed that her daughter’s DNA had been accessed to identify skeletal remains.
Parents undoubtedly have the best of intentions when they allow a nurse to make a small puncture in the side of their baby’s heel, and then dab the child’s bleeding foot on to a piece of paper.
With ever-increasing amounts of our data being hoovered up by tech giants, employers, insurers and the state, we deserve to know who’s playing with our metabolic building blocks.