Research : Autonomy : Biobanks : PhD project
Autonomy and trust in biobank research
Format
Funding
Time table
2006-
Aims
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. In this project, these questions will be investigated. Factual inclination to participate in biobank research will be determined and contrasted with estimations made through contemporaray attitude surveys. The concepts of autonomy and trust will be analyzed, their role in informed consent procedures elucidated, and their ethical value discussed.
Publications
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.
Contact and more information
- Linus Johnsson, MD, PhD Student
Supervisors
- Mats G. Hansson, Professor of biomedical ethics, CRB
- Gert Helgesson, Associate professor, Department of Learning, Information, Management and Ethcis (LIME), Karolinska Institutet
- Stefan Eriksson, Associate professor of research ethics, CRB
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