The RESET research group is hosting the last of three workshops in a project funded by the Research Council of Norway, the SAMKUL program. The previous workshops have been on dynamic consent and protection of privacy.

Recent developments in genetics and genomics have led to an intensified international debate about whether relevant genetic information should be shared with individual participants, and if yes, how this should be done. The emerging availability of personal genome scans, the increasing focus of the individual’s participatory role in disease prevention as part of personalized medicine the right to insight into information in research projects as well as a general emphasis on autonomy are strong drivers for implementing feedback of genomic information from research projects. However, these have to be balanced with issues of resource utilization and protection of participants from potential harm, avoiding unfounded screening, overdiagnosis, overtreatment and medicalization of populations.

The main questions concern whether there is a moral imperative to return results to participants, and if so, how to do this. Should individual return of results be considered a right, arguably the emerging international bioethics consensus, or should we stay with a public health model where return of results on an aggregated level still is the right level of benefit sharing? We assume that this is the part of the biobank debate where cultural differences is most decisive for different ways of framing the ethical debate, and we will address this in a comparative perspective.

Program

Thursday the 7th of September

9:00-9:30 Coffee and registration

Session 1 – Return of results: background and basic questions

Chair: Kristin S. Steinsbekk

9:30-10:10 Bjørn Kåre Myskja (NTNU, Trondheim) – Welcome: Return of results – the Norwegian context

10:10-10:50 John-Arne Skolbekken (NTNU, Trondheim) – The development of the understanding of incidental findings in medicine

10:50-11:10 Coffee break

11:10:-11:50 Lars Ursin (NTNU, Trondheim) – The HUNT4 (a) policy

11:50 – 12:50 Danya Vears (KU Leuven) – From laboratory practices on return of results to a decision making support tool

13:00-14:00 Lunch break

 

Session 2 – Return of results: empirical findings and their ethical significance

Chair: Berge Solberg

14:00-15:00 Nina Halloway (The ETHOX centre, University of Oxford) – The impact of receiving feedback from the Australian Ovarian Cancer Study (AOCS): some lessons for genome sequencing research

15:00-16:00 Eline M. Bunnik (Erasmus Medical Centre, Rotterdam University) – An ethical framework for the management of incidental findings in imaging studies

16:00-16:20 Coffee break

16:20-17:00 Giovanni De Grandis (NTNU, Trondheim) – The normative significance of empirical studies of return of results

17:00-17:45 Plenary: Return of results – the value of empirical studies Vears, Bunnik, Ursin, De Grandis

 

19:30 Conference dinner – Venue to be confirmed

 

Friday the 8th of September

Session 3 – The ethics and politics of return of results

Chair: Bjørn K. Myskja

 8:30-9:10 – Berge Solberg (NTNU, Trondheim) – The ethics of incidental findings

9:10- 9:50 – Kristian Hveem – From local biobank to international data sharing

9:50-10:10 Coffee break

10:10-11:10 – Isabelle Ljøsne (Biobank Norway) Return of results in biobanking – is it feasible?

11:10-12:10 Tim Caulfield (Health Law Institute, University of Alberta) – Who should control the fruits of biobanking?

12:10 -12:45 – Plenary discussion – The way forward (Caulfield, Hallowell, Hveem, Ljøsne)

12:45-13:00 – Berge Solberg (NTNU, Trondheim) – Final considerations

13:00 Lunch