Scientific Citizenship’s Youngest Domain: Function Creep in Norway’s Newborn Screening Programme
| Autor: | John-Arne Skolbekken, Sarah B. Evans-Jordan |
|---|---|
| Rok vydání: | 2021 |
| Předmět: |
Gerontology
medicine.medical_specialty Newborn screening Multidisciplinary business.industry Public health media_common.quotation_subject 06 humanities and the arts 0603 philosophy ethics and religion Biobank 03 medical and health sciences 0302 clinical medicine Medicine 060301 applied ethics 030212 general & internal medicine business Citizenship media_common |
| Zdroj: | Science Technology & Society |
| ISSN: | 0973-0796 0971-7218 |
| Popis: | Newborn screening (NBS) for inborn errors of metabolism and other serious conditions with onset during infancy is a widespread public health initiative. Like other screening programmes, it aims to discover and treat a disease before effects manifest themselves. Recently, there have been two prominent changes in NBS: a substantial increase in the number of conditions screened for and growing attention to secondary use of residual newborn blood spots. Here, we analyse how this latter change has transpired in Norway. In 2018, Norway’s parliament sanctioned the secondary use of NBS samples for epidemiological research unrelated to NBS. This broadened the programme’s scope, co-opting it for research purposes, making samples available for inclusion in Norway’s biobanking strategy. We argue that this transformation is a case of function creep, whereby the function of screening samples is expanded to serve purposes other than helping newborns. The process provided only minimal involvement from ordinary citizens, but it transformed screened infants into potential scientific citizens. Henceforth, all future generations of Norwegians must choose to stay in or opt out of biobank research when they turn sixteen. Additionally, consenting to this research may occasion a second form of function creep, as ‘actionable findings’ are fed back to participants. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|