When and under what circumstances may genetic information be used?
Format
Completed research project
Time table
The project was initiated in 1998.
Funding
FAS
Aims
The purpose of the project is to analyse the collection and use of medical information which is encapsulated in different kinds of blood or tissue samples.
The capacity of modern technology to diagnose and predict disease using DNA-analysis of tissue, cell-lines and blood samples has brought with it ethical and legal problems. Genetic information about an individual is of relevance also to genetic relatives to this individual.
Access to information and the handling of that information imply several matters of concern, such as the collection of material, the use of that material, storing it, and finally, sharing the stored material and information obtained by using it. Both instrumental and communicative procedures and actions take place during this process. The project includes case studies and an empirical investigation with the aim of learning about current practices for procedures of handling the material and the obtainment of informed consent. A questionnaire was sent out in the early autumn of 2001 to those active in processing medical information or storing tissue or blood samples, and a selected number of in-depth case studies will be carried out based on the findings of the questionnaire.
Sceintific publications
Kettis-Lindblad A, Ring L, Viberth E, Hansson MG, Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: A population-based study, Scandinavian Journal of Public Health 2007;35(2):148-156.
Hansson MG, Integritet - i spänningen mellan avskildhet och delaktighet (The Private Sphere - Emotional Territory and its Agent), Carlssons Förlag, Stockholm, 2006.
English version: Hansson MG, The Private Sphere. An Emotional Territory and Its Agent, Philosophical Studies in Contemporary Culture, Springer, Vol. 15, 2008, X, 182 p., ISBN: 978-1-4020-6651-1.
Kettis Lindblad Å, Ring L, Viberth E, Hansson MG, Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think?, European Journal of Public Health, 2006;16:433-440.
More information
- Mats G. Hansson, Professor of Biomedical Ethics
Collaborators
Mats G. Hansson, Professor of Biomedicial Ethics, CRB
Lena Ring, PhD
Department of Pharmacy, Uppsala University
Åsa Kettis Lindblad, PhD
Department of Pharmacy, Uppsala University
Elisabeth Rynning, Professor of Medical Law, CRB
Faculty of Law, Uppsala University
Göran Annerén, Associate Professor
Department of Genetics and Pathology, Uppsala University
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