28 January 2014
Scotland is considering whether or not to destroy archived newborn screening blood samples in the light of public concerns.
Newborn screening programmes in the UK use small bloodspot samples on special cards called Guthrie cards to test for the presence of selected metabolic and other genetic diseases. The programme began in the 1960s and has since expanded from the original condition, phenylketonuria, to a much broader and very successful NHS Newborn Blood Spot Screening Programme. Scotland has its own newborn screening programme.
The problem that has arisen is that the Guthrie cards were routinely stored, and parental permission for their retention was only relatively recently introduced, in 2003. This leaves 2.5 million cards stored in Scotland alone
Now the Scottish government has published a new report examining the ethical, legal and social issues surrounding ’the existence, continued storage and future uses of the newborn screening collection held in Scotland’.
Some are keen to use the Guthrie cards for medical research (see previous news), or even to screen for the risk of other forms of serious disease, but others fear their inappropriate use for law enforcement. There have previously been cases in different countries where the police have used cards to confirm the identity of crime suspects. This is considered by some to be an infringement of civil liberties; others are more concerned that samples that might be used for forensic purposes may not have been stored appropriately to guarantee the information that might be inferred from them.
Western Australia destroyed archived newborn bloodspot samples in response to such concerns; Ireland decided to do the same and then held off last year, while a recent decision by the Minnesota Department of Health in the US to destroy around a million stored samples is being opposed by the local section of the American Academy of Pediatrics, who say it would have a dangerous impact on child health.
The Scottish report notes concerns that the collection could act as a de facto DNA database, and proposes options including destruction of the archived bloodspot cards, efforts to gain informed consent to their ongoing retention (which would no doubt be very expensive to implement and limited in their success) and perhaps the best compromise, a well-publicised opt-out system.
The report concludes by noting that biomedical collections such as the Guthrie card archives have ‘transformative potential’ for individual, local and global health, making it important for long-term, robust, responsive and imaginative approaches to their management should be found.