Centre for Research Ethics & Bioethics (CRB)

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

This project has been part of AutoCure, BT-Cure, BBMRI.se

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