Mothers' views on the storage and usage of their children's biological material under the Danish biobanking model: A narrative approach using epistemic injustice

Abstract

Objectives: To investigate the knowledge and attitudes of mothers living in Denmark on the storage and usage of their children's biological material. The Danish Neonatal Screening Biobank contains blood from the Phenylketonuria-screening test. Legal, ethical, and moral concerns have been raised in several countries of how consent is obtained best in pediatric biobank governance. Research on knowledge and attitudes of Danish parents on the usage of their children's biological material is scarce. Methods: A coproduced study between a mother and 2 researchers. We analyzed 5 online focus group interviews using Ricoeur's hermeneutical narrative analysis. Results: Mothers have very little knowledge on the storage and usage of their children's biological material. They consider the Phenylketonuria-screening test to be part of a birth package, which leaves very little option of choice. They accept donating the material as a token of appreciation in an act of altruism toward the wider society but are only comfortable supporting Danish research. Conclusions: An exploration of the communal narrative build in the interviews reveal an overall feeling of duty to help benefit society, an overwhelming trust toward the health system, and epistemic unjust storage information practices.