Four decades of consent in Norwegian biobanking
Professor John-Arne Skolbekken and Professor Berge Solberg, Norwegian University of Science and Technology
Wednesday, 18 November 2020, 2.30pm to 4pm
This WEH/Ethox seminar will be held on Zoom, see link below.
Despite having a population of 5 million people, epidemiological research is considered one of Norway’s most valuable research assets. Well organised health registers and a unique individual identifier across the registers are among the factors contributing to this situation. Biobanking has become an important addition to Norwegian epidemiology in recent decades.
During these decades, issues related to informed consent has been a big topic in the ethical literature on biobanking. The strength and the weaknesses of different types of consent – specific, broad, dynamic, open, meta… - has been intensively debated. Rather than taking the ethical literature as the point of departure, we will situate this presentation in our own “laboratory” – the Nord-Trøndelag Health Study (HUNT) taking place in the county North Trøndelag in the middle of Norway. The HUNT research centre has invited the whole adult population of its county to participate in this survey once every decade for the past forty years, sampling blood for biobanking purposes on the last three occasions, resulting in a database with information on 230 000 people.
All along, the consent-issue has been present on the ground in a variety of new forms. The introduction of the biobank, the upstart of genetic research, genotyping, exome sequencing, return of results and commercial collaboration are only some of the controversial issues where the consent-issue has been at stake. In this presentation we give you the story of consent the way it has been unfolded in HUNT.
To complete the picture we will also present the most recent development of informed consent for biobank research based on the Norwegian newborn screening programme, where the Norwegian Parliament fairly recently passed an act ensuring permanent storage of the screening samples, making them available for general research purposes.