Jennifer Viberg Johansson
Jennifer Viberg Johansson
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.
Phone: +46 18 471 62 88
Handling incidental findings
How should we handle incidental findings in biobank and -omics research? Jennifer Viberg Johansson's PhD project examined the arguments for and against disclosure of incidental findings.
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.
Health data in cyber space
We are part of a Nordforsk funded project that develops recommendations for resilient governance mechanisms for cyberhealth.
ELSI-Service for BBMRI.se
We have run ELSI-Services for BBMRI.se (BioBanking and Molecular Resource Infrastructure of Sweden): a national effort for efficient and automated collection of biological material funded by the Swedish Research Council. Now replaced by Biobank Sweden.
Helping Europeans get healthier
BBMRI-LPC is building a network to connect established large-scale biobanks to new European biobank initiatives for large prospective cohort studies (LPC). We are involved in ethical and legal issues of transnational access to samples and data.
Rare disease research
RD-Connect is a 7th framework project that aims to build an integrated platform connecting registries, biobanks and clinical bioinformatics for rare disease research. We address the ethical, legal and social issues (ELSI).
Giving patients a voice in drug development
PREFER is a five year public-private research project where academic researchers and the pharmaceutical industry work together to find out when and where patients want, can and should be involved in drug development
Recently in the media
Preferences of the Public for Sharing Health Data: Discrete Choice Experiment
Part of JMIR MEDICAL INFORMATICS, 2021.
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.
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.
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
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.
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.
Freedom of Choice about Incidental Findings can frustrate participants’ true preferences
Part of Bioethics, p. 203-209, 2016.
Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks
Part of Ethics, Law and Governance of Biobanking, 2015.
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.
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.