Centre for Research Ethics & Bioethics (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, 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

Biobank and registry ethics & law

For many years, researchers at CRB have provided constructive advise on how to deal with ethical and legal aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals. As a summary of this research we have compiled a list of publications with abstracts. We have grouped them thematically to help you find the ones you might be interested in reading. Our publications deal with ethical frameworks and policy, regulatory aspects of biobank and registry research, informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases, children & biobanks & genetics, and biobank studies.

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Biobank and registry ethics & law, report