The next new petition is PE1823, on full-body scans for all neonates in Scotland. The petition, which was lodged by Sameena Javed, calls on the Scottish Government to offer full-body scans to all neonates in Scotland with the aim of detecting—and, it is hoped, treating—rare and hidden conditions.
The Scottish Government’s response advises that Scotland’s pregnancy and newborn screening programme does not currently include the condition to which the petition refers, which is arteriovenous malformation. It describes developments that are relevant to the petition, such as the new congenital anomalies and rare diseases registration and information service for Scotland.
Genetic Alliance UK states that it
“agrees with ... the Scottish Government that full body scans for all neonates would ‘carry an element of risk’ and does not recommend routine scanning of newborns.”
It advises nonetheless that it “fully supports” the petitioner’s aim of improving the early detection of rare conditions and the opportunities for treatment. It states:
“One way to achieve this would be for the Scottish Government to review and expand the existing Newborn Screening Programme.”
It goes on to note that
“Scotland currently screens for just nine conditions”,
whereas
“Iceland, for example, screens for 47 conditions, the Netherlands for 34 and Norway for 28.”
The petitioner’s response to the Scottish Government and Genetic Alliance UK highlights that early detection gives a greater chance of a successful outcome. She therefore proposes that
“Body scans for neonates should be offered to all parents”,
and that parents should have the choice of whether to accept the scan, as it may save their child’s life. She agrees with Genetic Alliance UK that the newborn screening programme in Scotland should be reviewed and expanded.
This is another challenging petition. It comes from the family’s direct experience, and we appreciate the petitioner bringing it forward as a result of her own terrible and tragic circumstances.
The suggestion that is offered acknowledges that there is a risk involved but says that the scan should be offered to parents. How would parents feel about that? Would they even be informed enough to know whether they should take up the offer? I certainly think that there is an issue. Questions around the value of a young person’s life and the ability to capture a condition early on are obviously powerful, but the benefits have to be balanced with the risks. I am interested to hear what other committee members think, starting with Tom Mason.