Nearly 800,000 newborn blood samples are currently stored in a biobank at Oslo University Hospital, with the collection growing by 56,000 samples annually. While the primary purpose of the screening is to identify 25 serious, treatable conditions in infants, a 2018 legislative change by the Storting expanded the storage duration from six years to an indefinite period to facilitate future research, according to Oslo University Hospital.
Why the storage duration changed
The transition to indefinite storage was enacted by the Storting in 2018 to ensure that biological material remains available for long-term research and ongoing development of screening methods. According to Olve Moldestad, head of the Newborn Screening department, the samples serve as an “invaluable tool” for both quality control and providing future health assistance to participants. Because the law was applied with retroactive effect, samples collected as far back as 2012 are currently held in the facility.
Did You Know? The biobank at Oslo University Hospital has a total capacity for 1.7 million samples, meaning it is currently less than half full despite holding records for nearly the entire generation of children born in Norway since 2012.
Concerns regarding privacy and consent
The Norwegian Data Protection Authority (Datatilsynet) has expressed concern over the implications of permanent storage. Susanne Lie, the authority’s legal director, warns that the indefinite retention of samples could, in theory, allow for the creation of a comprehensive genetic database of the Norwegian population. Lie argues that obtaining informed consent immediately following a birth is problematic, as parents may not fully grasp the long-term consequences of agreeing to indefinite storage.
Expert Insight: The friction between public health initiatives and data privacy highlights a classic dilemma in biobanking: the tension between the collective benefit of medical research and the individual right to control one’s biological data. While the state emphasizes the life-saving potential of early detection, the lack of widespread public awareness regarding the “indefinite” nature of the storage creates a potential trust deficit that authorities must now address through increased transparency.
What happens next for parents
The Newborn Screening department is currently developing a new digital consent solution, which Olve Moldestad expects to be implemented within 12 to 24 months. Currently, parents receive information about the biobank during pregnancy and after birth, followed by a notification letter when the child turns two, which includes an option to withdraw consent and request that the sample be destroyed. A separate notification is also sent to the child upon their 16th birthday.
Frequently Asked Questions
How many children are screened for diseases?
Almost 100 percent of newborns in Norway participate in the screening program, which detects serious conditions in one out of every 1,000 children.
Can parents stop the storage of their child’s sample?
Yes. Parents are informed of their right to withdraw consent and have the sample destroyed. This information is provided in a letter sent when the child reaches two years of age.
Is the stored blood used for research without permission?
No. According to official guidelines, any use of the samples for research requires explicit consent from those involved and must be approved by a regional ethics committee.
Would you feel comfortable knowing your child’s biological data is stored indefinitely if it could potentially aid future medical research?
