Ethical aspects of biobank research – Individual rights vs. the public good?
Biobank research is important because it offers a means to increase medical knowledge, and thereby further healthcare, without imposing significant costs or risks on individuals. Therefore, the prerequisites for conducting such research should be optimized.
This PhD project explored the relationship between individuals and society in the context of medical research and healthcare, regarding possible rights and duties of individuals in biobank-based research. More specifically, it will investigate if the apparent conflict between individual rights and public benefit can be reconciled, and if individuals have a moral duty to participate in this kind of research.
The project starts with existing problems, such as what constitutes adequate consent for participating in biobank research and whether or not individual results should be returned. It is undertaken from an applied ethics perspective, and its focus lies on practical consequences and policy implications of different philosophical positions, rather than on their theoretical underpinnings.
Stjernschantz Forsberg, J, Biobank Research: Individual Rights and Public Benefit, doctoral thesis, Acta Universitatis Upsaliensis, 2012
Stjernschantz Forsberg J, Hansson MG, Eriksson S, Why participating in (certain) scientific research is a moral duty, J Med Ethics, 2014;40:325-328.
Forsberg JS, Eriksson S, Hansson MG, Changing defaults in biobank research could save lives too, European Journal of Epidemiology, 2010;25(2):65-8.
Stjernschantz Forsberg J, Hansson MG, Eriksson S, Changing perspectives in biobank research – from individual rights to concerns about public health regarding the return of results, European Journal of Human Genetics, 2009:17:1544-1549.
Joanna Stjernschantz Forsberg was part of the group from 2007-2013. She defended her PhD thesis on biobank research (individual rights and public benefit) on October 6, 2012. She started her PhD studies in bioethics in 2007. She holds a degree in Medicine from Uppsala University (1998) and a license to practice (2002). Her main area of research was the relationship between rights and duties of individuals and society in healthcare and medical research, in particular in biobank based research and public health ethics.
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.
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.
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.
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.