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.
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
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.
Biobanks and registries in research
We aim for a biobank and registry management that satisfies ethical and legal demands from the research community, the public and the individual.
We are investigating risk information from serval perspectives.
Managing genetic risk information
Research generates huge amounts of genetic information. How should we handle it? That is what we are trying to find out in a large international research project.
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.