Autonomy and trust in biobank research
People are often willing to participate in biobank research in spite of concerns raised in media about potential risks to personal integrity. Moreover, information about the research is often disregarded by participants. This suggests a connection between autonomy and trust; however, neither the nature of this connection nor the relative importance of these concepts is clear.
This PhD project looked at people's factual inclination to participate in biobank research. It also analyzed the concepts of autonomy and trust, their role in informed consent procedures and discussed their ethical value.
Publications
Johnsson L, Trust in Biobank Research: Meaning and Moral Significance, Doctoral thesis, Acta Universitatis Upsaliensis, 2013
Johnsson L, Helgesson G, Hansson MG, Eriksson S, Adequate trust avails, mistaken trust matters: On the moral responsibility of doctors as proxies for patients’ trust in biobank research, Bioethics, Article first published online: 10 JUN 2012, DOI: 10.1111/j.1467-8519.2012.01977.x
Johnsson L, Helgesson G, Rafna, T, Halldorsdottir I, Chia KS, Eriksson S, and Hansson MG, Hypothetical and factual willingness to participate in biobank research, European Journal of Human Genetics, 2010;18:1261-1264.
Johnsson L, Hansson MG, Eriksson S, Helgesson G, Opt-out from biobanks better respects patients’ autonomy. BMJ, 2008;337(a1580).
Johnsson L, Hansson MG, Eriksson S, Helgesson G, Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study, BMJ, 2008;337(a345):224-26.
PhD student
Linus Johnsson defended his PhD thesis (Trust in Biobank Research) on March 9 2013. During his PhD studies he worked part-time as a medical doctor at a health care centre in Strängnäs. He holds a degree in Medicine from Uppsala University (2004) and license to practice (2006). Linus Johnsson now part of the Family Medicine and Preventive Medicine research group at the Department of Public Health and Caring Sciences.
Supervisors
- Mats G. Hansson, Professor of biomedical ethics, CRB
- Gert Helgesson, Professor, Department of Learning, Information, Management and Ethcis (LIME), Karolinska Institutet
- Stefan Eriksson, Associate professor of research ethics, CRB
Funding
Biobanks and registries in research
We aim for a biobank and registry management that satisfies ethical and legal demands from the research community, the public and the individual.
Arthritis: Early treatment
The development of new therapeutic agents against Rheumatoid arthritis (RA) and RA-like diseases requires a dynamic interaction between studies in humans and in animal models of disease.
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.
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.
