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

Should researchers inform research participants, if they discover genetic disease risks in the participants? Yes, many would say, if the information is helpful to the participants. However, the value of complex genetic risk information for individuals is uncertain. Both geneticists and ethicists need to acknowledge this uncertainty. 

This project examined the arguments for and against disclosure of incidental findings in biobank and –omic research, with the intention of answering whether research participants want information about incidental findings. If they do, under which conditions do they want to know? To find the answer, both philosophical analysis of basic concepts and arguments and an empirical study were conducted. For the empirical work Discrete Choice Experiments, developed for health economy studies, was used to capture individuals’ preferences in complex choice situations. 

Publications

Viberg Johansson J, INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences, Doctoral dissertation, Acta Universitatis Upsaliensis, 2018

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

PhD student

Jennifer Viberg Johansson is interested in methods used to investigate peoples stated preferences, and how to balance such preferences against other ethical values. She defended her thesis “INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences” in September 2018. Jennifer Viberg Johansson continues her work at CRB, and is involved in multiple projects surrounding patient preferences and risk information. 

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