Jennifer Viberg Johansson1, Pär Segerdahl2, Ulrika Hösterey Ugander3, Mats G Hansson2, Sophie Langenskiöld4. 1. Centre for Research Ethics & Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Box 564, Uppsala SE-751 22, Sweden. Electronic address: jennifer.viberg@crb.uu.se. 2. Centre for Research Ethics & Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Box 564, Uppsala SE-751 22, Sweden. 3. Clinical Genetics, Sahlgrenska University Hospital, Gothenburg, Sweden. 4. Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden; Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden.
Abstract
OBJECTIVE: It is well known that research participants want to receive genetic risk information that is about high risks, serious diseases and potential preventive measures. The aim of this study was to explore, by qualitative means, something less well known: how do healthy research participants themselves make sense of genetic risk information? METHOD: A phenomenographic approach was chosen to explore research participants' understanding and assessment of genetic risk. We conducted four focus-group (N=16) interviews with participants in a research programme designed to identify biomarkers for cardiopulmonary disease. RESULTS: Among the research participants, we found four ways of understanding genetic risk: as a binary concept, as an explanation, as revealing who I am (knowledge of oneself) and as affecting life ahead. CONCLUSION: Research participants tend to understand genetic risk as a binary concept. This does not necessarily imply a misunderstanding of, or an irrational approach to, genetic risk. Rather, it may have a heuristic function in decision-making. PRACTICAL IMPLICATIONS: Risk communication may be enhanced by tailoring the communication to the participants' own lay conceptions. For example, researchers and counselors should address risk in binary terms, maybe looking out for how individual participants search for threshold figures.
OBJECTIVE: It is well known that research participants want to receive genetic risk information that is about high risks, serious diseases and potential preventive measures. The aim of this study was to explore, by qualitative means, something less well known: how do healthy research participants themselves make sense of genetic risk information? METHOD: A phenomenographic approach was chosen to explore research participants' understanding and assessment of genetic risk. We conducted four focus-group (N=16) interviews with participants in a research programme designed to identify biomarkers for cardiopulmonary disease. RESULTS: Among the research participants, we found four ways of understanding genetic risk: as a binary concept, as an explanation, as revealing who I am (knowledge of oneself) and as affecting life ahead. CONCLUSION: Research participants tend to understand genetic risk as a binary concept. This does not necessarily imply a misunderstanding of, or an irrational approach to, genetic risk. Rather, it may have a heuristic function in decision-making. PRACTICAL IMPLICATIONS: Risk communication may be enhanced by tailoring the communication to the participants' own lay conceptions. For example, researchers and counselors should address risk in binary terms, maybe looking out for how individual participants search for threshold figures.
Authors: Erva Khan; Kimberly A Kaphingst; Kirsten Meyer White; Andrew Sussman; Dolores Guest; Elizabeth Schofield; Yvonne T Dailey; Erika Robers; Matthew R Schwartz; Yuelin Li; David Buller; Keith Hunley; Marianne Berwick; Jennifer L Hay Journal: J Community Genet Date: 2021-11-19
Authors: Karen M Meagher; Kelsey Stuttgen Finn; Susan H Curtis; Jack Borucki; Annika T Beck; Amal W Cheema; Richard R Sharp Journal: Clin Transl Sci Date: 2021-11-25 Impact factor: 4.689