As I write this, around half the population of New Zealand is sitting under the corrugated iron roof of a warehouse in South Auckland. Admittedly each person is only represented by a few spots of blood taken from them shortly after their birth. But if your blood is in that warehouse, the DNA in those few drops is all a lab technician would need to unlock a wealth of information about your past and possible future.
The blood spots are held, of course, on the more than two million Guthrie cards left over from fortyish years of the Newborn Metabolic Screening Programme. The programme uses a newborn heelprick blood sample to check for treatable genetic conditions and saves dozens of lives each year.
The problem is that phrase ‘left over’. Everyone agrees that the screening programme is valuable. But, until recently, there’s been no such agreement about what might be done with the remaining cards and the precious DNA that they hold. There are possible research uses, to be sure, and the Police sometimes need them to identify victims of crime when no other avenue is available, but there has been no real consensus on why millions of cards should be kept indefinitely apart from ‘in case we might need them one day’.
And this is a problem. Because when a valuable collection is held forever without a purpose, eventually a purpose will be found for it. And if that purpose doesn’t mesh with why the samples were provided in the first place then we risk jeopardising something precious.
For instance a complete national DNA database based on the Guthrie card collection might be a research gold mine. Sequencing the DNA in the bloodspots would be an enormous job, true, but DNA testing is becoming faster and cheaper all the time. In the last twelve years the cost of sequencing a single genome has dropped from $100 million to somewhere south of $10,000. In ten or twenty years the technical challenge might just be feeding the cards into a hopper and going out for a long lunch. And when something’s very cheap and easy to accomplish, the political arguments against it are a lot harder to make.
However if a new mother were to find out that her own blood sample, provided in good faith when she was a baby, was going to be used for research without her permission she’d be less willing to participate in the programme with her own baby. Multiply that by a few hundred thousand mothers and a life-saving screening programme might start to look shakey.
So if we are to protect public faith and trust in the Newborn Metabolic Screening Programme then we need strict rules around how the Guthrie cards can be used now and in the future. And those rules need to be secured by law to make sure they don’t change at the stroke of a bureaucrat’s pen.
Back in 1999 the first Privacy Commissioner, Bruce Slane, made just this point. He suggested something needed to be done about the Guthrie Card collection; either putting a strong fence of regulation around it or carefully disposing of the cards that were no longer needed. Over the intervening years, we have done a lot of work with the National Screening Unit, clinicians and the public to find a way to protect the cards.
On 30 April a new amendment of the Health Information Privacy Code comes into force. Without getting too legalistic, the amendment adds a new set of rules around information derived from Guthrie card blood spots, such as DNA. It says that any use associated with the screening programme – carrying out the test, maintaining test quality or even developing new tests – is fine. It also allows people to use and disclose their own information, and gives parents and close relatives a similar level of control where the blood spot comes from a child or deceased person. Finally, it allows for secondary uses such as the Police identifying human remains, court and coroner orders and some level of carefully monitored research.
But any uses not mentioned in the amendment are forbidden. This might seem sweeping, but in my view it’s the right way to give the collection the protection it needs. Putting these rules into legal form as a code means there’s a transparent process for changing the code after consultation, should a genuine need arise. So the code provides strong, but flexible, protection.
Having a strong fence of legislation around our national blood spot collection puts us on a good footing internationally. Nearly all the countries that conduct the Guthrie test on newborns either destroy the cards after a few years or have laws to protect the cards and maintain public faith in their programmes.
DNA technology could be compared to a train, rocketing along the tracks at night. Which makes us the passengers. And though it is hard to imagine where the racing locomotive of DNA technology might take us, if we are to get there safely I think we need to make sure we trust both the drivers and the tracks.