Jennifer Viberg Johansson

Jennifer Viberg Johansson

Jennifer Viberg Johansson

Researcher
PhD Medical sciences

Jennifer Viberg Johansson is interested in methods used to investigate peoples stated preferences, and how to balance such preferences against other ethical values. For her PhD project, Jennifer Viberg Johansson was looking at the ethical issues concerning disclosure of incidental (or secondary) findings to participants of genetic research. Disclosure of health related information such as blood pressure, lung function, cholesterol and blood sugar is uncontroversial and common practice, but there is great debate in the biobank community on whether or not to disclose genetic risk information, and especially incidental findings.

Jennifer Viberg Johansson’s first two studies have a theoretical perspective on the arguments for and against disclosure, and whether offering participants to express their preferences would solve the issue. The second part of her thesis consists of empirical studies, where both qualitative and quantitative methods are used to capture participants’ preferences for genetic risk information. For example, using Discrete Choice Experiments to calculate participants’ trade-offs between different features of genetic risk information and to see if there are any differences between groups.

Jennifer Viberg Johansson holds a PhD in medical science from Uppsala University and a MA in Rehabilitation Science from Mid Sweden University. She is a licensed Prosthetist and Orthotist. Before starting her PhD studies, she was teaching at Jönköping University. She has been involved in the IMI-funded BTCure project on Rheumatoid Arthritis, Mind the Risk and BBMRI.se. In 2018, she started her postdoc position in the projects Governance of health data in cyberspace and PREFER. She is also a researcher at the Institute of Future Studies in Stockholm. She is involved in a WASP-HS project about diffusion of artificial intelligence in society. 

E-mail: jennifer.viberg@crb.uu.se
Phone: +46 18 471 62 88

Publications

  • Grauman, Åsa; Viberg, Jennifer; Falahee, Marie; Veldwijk, Jorien

    Public perceptions of myocardial infarction: Do illness perceptions predict preferences for health check results

    Part of Preventive Medicine Reports, p. 101683-101683, 2022.

    Open access
  • Viberg, Jennifer; Bentzen, Heidi Beate; Mascalzoni, Deborah

    What ethical approaches are used by scientists when sharing health data?: An interview study

    Part of BMC Medical Ethics, 2022.

    Open access
  • Viberg Johansson, Jennifer; Bentzen, Heidi Beate; Shah, Nisha; Haraldsdóttir, Eik et al.

    Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

    Part of JMIR Medical Informatics, 2021.

    Open access
  • Shah, N.; Viberg Johansson, Jennifer; Haraldsdóttir, E.; Bentzen, H.B. et al.

    Governing health data across changing contexts: A focus group study of citizen’s views in England, Iceland, and Sweden

    Part of International Journal of Medical Informatics, 2021.

    Open access
  • Viberg, Jennifer; Shah, Nisha; Haraldsdóttir, Eik; Bentzen, Heidi Beate et al.

    Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies

    Part of Technology in society, p. 101625-101625, 2021.

    Open access
  • Schölin Bywall, Karin; Esbensen, Bente Appel; Lason, Marta; Heidenvall, Marie et al.

    Functional capacity vs side effects: treatment attributes to consider when individualising treatment for patients with rheumatoid arthritis

    Part of Clinical Rheumatology, 2021.

  • Jimenez-Moreno, Aura Cecilia; Pinto, Cathy Anne; Levitan, Bennett; Whichello, Chiara et al.

    A study protocol for quantifying patient preferences in neuromuscular disorders: a case study of the IMI PREFER Project [version 1; peer review: 1 approved]

    Part of Wellcome Open Research, 2020.

    Open access
  • Veldwijk, Jorien; Viberg Johansson, Jennifer; Donkers, Bas; de Bekker-Grob, Esther W.

    Mimicking Real-Life Decision Making in Health: Allowing Respondents Time to Think in a Discrete Choice Experiment

    Part of Value in Health, p. 945-952, 2020.

  • Viberg, Jennifer; Langenskiöld, Sophie; Segerdahl, Pär; Hansson, Mats G. et al.

    Research participants' preferences for receiving genetic risk information: a discrete choice experiment

    Part of Genetics in Medicine, p. 2381-2389, 2019.

  • Viberg Johansson, Jennifer

    INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences

    Open access

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.

Download our biobank and registry report

Biobank and registry ethics & law, report cover

Multidisciplinarity, genetic risk information and ethics

Genetic risk is complex and difficult to understand. People react differently to genetic risk information. Some want to know everything; others don’t want to know at all. Jennifer Viberg is working to find out what people who participate in biobank research actually want researchers to do with potential secondary findings about participant’s genetic risk for different conditions.

Read interview

Jennifer Viberg
Last modified: 2022-01-31