Jennifer Viberg Johansson
Jennifer Viberg Johansson
Researcher
Associate Professor in Medical Ethics
Jennifer Viberg Johansson works as a licensed prosthetist and orthotist (orthopedic engineer) and site manager at Camp Pro Ortopedteknik in Uppsala. She has been an associated researcher with CRB since November 2023. Between 2012 and 2023, she has been employed, either fully or partially, by CRB.
In her research, she has been 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 is an associate professor in medical ethics at Uppsala University and 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 was also a researcher at the Institute of Future Studies in Stockholm. She was involved in a WASP-HS project about diffusion of artificial intelligence in society.
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.
AICare: AI, Automation & the Right to Health
Big data in combination with self-learning algorithms is gradually changing our society. This project is anticipating legal pitfalls & presenting proposals for measures to take to ensure patient safety & public acceptance.
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).
Patient preferences
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
- Så kan vi tänka oss att dela vår hälsodata
P4 Uppland, 2021-07-06 - Genetisk risk: Ska forskare berätta?
Vetenskapsradion, 2018-10-05
Publications
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Patients accept therapy using embryonic stem cells for Parkinson's disease: a discrete choice experiment
Part of BMC Medical Ethics, 2023.
DOI for Patients accept therapy using embryonic stem cells for Parkinson's disease: a discrete choice experiment Download full text (pdf) of Patients accept therapy using embryonic stem cells for Parkinson's disease: a discrete choice experiment
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Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.
Part of Journal of Medical Internet Research, p. e47066-, 2023.
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Physical function and severe side effects matter most to patients with RA (< 5 years): a discrete choice experiment assessing preferences for personalized RA treatment
Part of BMC Rheumatology, 2023.
DOI for Physical function and severe side effects matter most to patients with RA (< 5 years): a discrete choice experiment assessing preferences for personalized RA treatment Download full text (pdf) of Physical function and severe side effects matter most to patients with RA (< 5 years): a discrete choice experiment assessing preferences for personalized RA treatment
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Comparing Outcomes of a Discrete Choice Experiment and Case 2 Best-Worst Scaling: An Application to Neuromuscular Disease Treatment
Part of Patient, p. 239-253, 2023.
DOI for Comparing Outcomes of a Discrete Choice Experiment and Case 2 Best-Worst Scaling: An Application to Neuromuscular Disease Treatment Download full text (pdf) of Comparing Outcomes of a Discrete Choice Experiment and Case 2 Best-Worst Scaling: An Application to Neuromuscular Disease Treatment
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Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis
Part of BMJ Open, p. e058303-e058303, 2022.
DOI for Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis Download full text (pdf) of Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis
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Preference Variation: Where Does Health Risk Attitude Come Into the Equation?
Part of Value in Health, p. 2044-2052, 2022.
DOI for Preference Variation: Where Does Health Risk Attitude Come Into the Equation? Download full text (pdf) of Preference Variation: Where Does Health Risk Attitude Come Into the Equation?
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Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study
Part of BMC Medical Ethics, 2022.
DOI for Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study Download full text (pdf) of Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study
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Functional capacity vs side effects: treatment attributes to consider when individualising treatment for patients with rheumatoid arthritis
Part of Clinical Rheumatology, p. 695-704, 2022.
DOI for Functional capacity vs side effects: treatment attributes to consider when individualising treatment for patients with rheumatoid arthritis Download full text (pdf) of Functional capacity vs side effects: treatment attributes to consider when individualising treatment for patients with rheumatoid arthritis
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Public perceptions of myocardial infarction: Do illness perceptions predict preferences for health check results
Part of Preventive Medicine Reports, p. 101683-101683, 2022.
DOI for Public perceptions of myocardial infarction: Do illness perceptions predict preferences for health check results Download full text (pdf) of Public perceptions of myocardial infarction: Do illness perceptions predict preferences for health check results
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What ethical approaches are used by scientists when sharing health data?: An interview study
Part of BMC Medical Ethics, 2022.
DOI for What ethical approaches are used by scientists when sharing health data?: An interview study Download full text (pdf) of What ethical approaches are used by scientists when sharing health data?: An interview study
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.
