This article is machine translated by Google from Norwegian
A proposal to amend a regulation on genetic testing of all newborns may eventually end up in a national DNA registry. The proposal deals with the newborn screening, which is an offer to new-born parents to test their child for a variety of serious illnesses. Today, the blood samples are stored for six years, mainly to improve the tests. According to consultant Asbjørg Stray-Pedersen at the Department of Newborn Screening at Oslo University Hospital, it all started with their desire to allow screening for two new diseases, and to increase the storage time to ten years. She responds that "eternal storage" has been added to the consultation proposal.
“Two days after the birth, mother is asked if she wants the baby screened for illnesses. Almost everyone thanks yes. Written consent is not required, and many feel that the test is mandatory. And then the blood tests will be stored forever? ”Says Stray-Pedersen. The Danish Data Protection Agency agrees with the criticism: "The primary purpose of the screening is to uncover various types of diseases, and those who consent on behalf of the child are in a vulnerable position," said Grete Alhaug, legal senior adviser.
The proposal for eternal storage began with the desire to allow screening for two new diseases, and to increase the storage life to ten years.
Sensitive information. If the requirement to destroy newborn blood samples after a given period of time is abolished, a national biobank will be established in practice. “We are talking about sensitive information and a source of genetic analysis of the entire population. This must be considered as a separate question and not just as a change in newborn screening. We are not opposed to an expansion of medical considerations, but believe that permanent storage and use for secondary purposes is a big step further, ”says Alhaug.
For Stray-Pedersen, this is a far more important question than what appears in the proposal. "In Sweden, such data has been used to identify criminals, and after the tsunami to identify the dead. Positive and negative – but anyway something completely different than the newborn screening of today. People need to understand what is at stake, "she says. Stray-Pedersen is also concerned that the proposal for perpetual storage may affect patients: "It may delay the decision and postpone the implementation of screening for severe immune deficiency – which it is really urgent to put in place."
See also: Disagreement about health data