Centrum för forsknings- & bioetik (CRB)

How should incidental findings in biobank research and genome sequencing studies be handled?

Aims

This project will assess the argument for and against disclosure of incidental findings in biobank and –omic research and suggest how these findings should be handled in practice. Both philosophical analysis of basic concepts and arguments and an empirical study will be conducted. The empirical study intends to answer if research participants want to know about incidental findings, and if so under what conditions do they want to know. The method for that study will be Discrete Choice Experiments, developed for health economy studies, and the primary aim is to capture the individuals’ preferences in complex choice situations.

Publications

Viberg J, Segerdahl P, Hösterey Ugancer U, Hansson MG, Lagenskiöld S, Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research, Patient Education and Counseling, Article first published online: 27 SEPT 2017, DOI: 10.1016/j.pec.2017.09.009

Viberg J, Segerdahl P, Langenskiöld S, Hansson MG, Freedom of Choice About Incidental Findings Can Frustrate Participants' True Preferences, Bioethics, Article first published online: 23 APR 2015 DOI: 10.1111/bioe.12160

Viberg J, Hansson MG, Langenskiöld S, Segerdahl P, Incidental findings: the time is not yet ripe for a policy for biobanks, European Journal of Human Genetics advance online publication, 2014;22:437-441

Format

PhD project

Funding

This project has received funding from BBMRI.se, BBMRI-LPC and BT-Cure.

Time table

2012-

Contact

Jennifer Viberg Johansson, BSc, MA, PhD Student

Supervisors

Mats G. Hansson, Professor of Biomedical Ethics

Pär Segerdahl, Associate Professor of Philosophy

Sophie Langenskiöld, Senior Researcher, Department of Public Health and Caring Sciences, Uppsala University

Biobanks- och registerforskning: Etik och juridik

Vi har ägnat många år åt konstruktiv vägledning kring hanteringen av etiska och juridiska aspekter av forskning på mänskligt vävnadsmaterial och persondata. Vi samarbetar med biomedicinare och publicerar våra resultat i vetenskapliga tidskrifter.

Vi har sammanställt våra publikationer (med abstracts) i en rapport. Rapporten är på engelska och uppdaterades i juni 2016.

Ladda ner rapporten

Biobank and registry ethics & law, rapport