Bio-banking and genetic testing: a comparison between European countries and India.
Journal International de Bioéthique = International Journal of Bioethics 2009 September; 20(3): 57-68
In the last decade, the participation of patients and populations in large collections of human biological samples and genetic data ("bio-banks") played a more and more important role. The results of researches have led to a lot of new scientific findings: Regarding the high degree of ethnic diversity between and within European countries themselves and also in the Indian Union in this context, the arising question is how the consequences of this diversity are recognised and have been taken into account to provide better healthcare services. There is also a social, cultural and religous sensitivity which need to be considered in the planning and delivery of these services. At the same time, it is also necessary to recognise the danger of making a priori assumptions based on the cultural traditions of the respective researchers. In this context, the last few years also the possible benefit of pharmacogenetis has been discussed within the scientific community, though less in public. It seems questionable in which way public awareness, education and understanding of genetics and genetics related concepts and technologies were increasing and have been taken into account. Open communication and debate about real and perceived benefits as well as risks, paired with evidence of appropriate handling of data and samples, will be essential to establish a reasonable level of trust within the communities. This will be the basis which allows the scientific and medical community to conduct reasearch, and it is also capable of improving health care issues. The following presentation will discuss the ethic and legal framework in Europe and India and do a comparison in light of the questions raised above.
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Jansen, Brigitte (2009-09)In the last decade, the participation of patients and populations in large collections of human biological samples and genetic data ("bio-banks") played a more and more important role. The results of researches have led ...
Cambon-Thomsen, A.; Hirtzlin, I.; Preaubert, N.; Dubreuil, C.; Duchier, J.; Jansen, B.; Simon, J.; Lobato de Faria, P.; Perez- Lezaun, A.; Visser, B.; Williams, G.; Galloux, J.C. (2003)