Centre for Research Ethics & Bioethics (CRB)

Jennifer Viberg

Jennifer Viberg Johansson

BSc, MA, PhD student

Jennifer Viberg Johansson is interested in different methods to investigate peoples stated preferences, especially how to balance peoples preferences against other ethical values. Her PhD project is looking at the ethical issues concerning disclosure of incidental (or secondary) findings to research participants in 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 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. She is currently conducting empirical studies using both qualitative and quantitative methods to capture participants’ preferences when it comes to genetic risk information, for example using Discrete Choice Experiments to calculate participant’s trade-offs between different features of genetic risk information and to see if there are any differences between groups.

Jennifer Viberg Johansson holds an MA in Rehabilitation Science from Mid Sweden University. She is a licensed Prosthetist and Orthotist. Before starting her PhD, 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.

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

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