Jennifer Viberg

Jennifer Viberg Johansson

Postdoc 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 is currently involved in the IMI-funded BTCure project on Rheumatoid Arthritis, Mind the Risk and BBMRI.se. In September 2018, Jennifer Viberg Johansson started as a postdoc researcher in the projects Governance of health data in cyberspace and PREFER

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

Publications

  • Universitetshuset, sal IX, Biskopsgatan 3, Uppsala 2018-09-21 09:15

    Viberg Johansson, Jennifer

    INDIVIDUAL GENETIC RESEARCH RESULTS: Uncertainties, Conceptions, and Preferences

    Open access
  • Viberg, Jennifer; Segerdahl, Pär; Hösterey Ugander, Ulrika; Hansson, Mats G. et al.

    Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research

    Part of Patient Education and Counseling, p. 422-427, 2018.

  • Veldwijk, J.; Viberg Johansson, Jennifer; Donkers, B.; de Bekker-Grob, E. et al.

    Mimicking Real Life Decision-Making In Health: Allowing Respondents Time-To-Think In A Discrete Choice Experiment

    Part of Value in Health, p. A406-A406, 2017.

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

    Freedom of Choice about Incidental Findings can frustrate participants’ true preferences

    Part of Bioethics, p. 203-209, 2016.

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

    Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks

    Part of Ethics, Law and Governance of Biobanking, 2015.

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

    Incidental findings: the time is not yet ripe for a policy for biobanks

    Part of European Journal of Human Genetics, p. 437-441, 2014.

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

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.

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Jennifer Viberg