Benefit-sharing, Biobanks and Vulnerable Populations
With the rapid development of tools for DNA extraction, there has been a notable increase in the establishment of small and large biobanks for the purpose of research. Combined with highly efficient methods for DNA analysis, biobanks provide a large scale
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Abstract With the rapid development of tools for DNA extraction, there has been a notable increase in the establishment of small and large biobanks for the purpose of research. Combined with highly efficient methods for DNA analysis, biobanks provide a large scale tool for biomedical research. As biobanks continue to be established worldwide, new and recurring ethical issues are put forward in the international arena. One such topic is benefit-sharing, which offers ways to address, on a small scale, existing global inequities, especially those related to the benefits and burdens of medical research. This paper attempts to address some of the concerns related to the development of benefit-sharing frameworks, particularly in the context of vulnerable populations, who typically suffer from the inequities that benefit-sharing intends to address. The discussion is based implicitly and explicitly on the following five questions: Who are the vulnerable? How can benefit-sharing be justified? What exactly should be shared? When is benefit-sharing appropriate? Why are certain benefit-sharing schemes being offered? Emphasis is put on the importance of the context in which benefits are shared. Furthermore, obstacles and complexities of benefit-sharing are illustrated with regard to the findings of a qualitative study. The paper concludes by looking at biobanks in connection with global justice in the field of health research.
1 Setting the Scene Since the completion of the Human Genome Project, genomics and genetic medicine have been increasingly perceived as promising areas of biomedical research. Biobanks1, which provide large scale, long-term storage of biological samples, together with relatively inexpensive methods of genetic analysis, have become prime tools for such research. Some commentators suggest that genomics brings “the ultimate promise of revolutionizing the diagnosis and treatment of many illnesses” (Collins and McKusick 2001: 475). Moreover, according to a WHO re1
While the term ‘biobank’ is defined in various ways in the literature, the following general definition is used for the purpose of this paper: biobanks are collections of human tissues, blood, cells or DNA that can be used for genomic research and that can be associated with personal data.
P. Dabrock et al. (eds.), Trust in Biobanking, DOI 10.1007/978-3-540-78845-4_16, © Springer-Verlag Berlin Heidelberg 2012
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Agomoni Ganguli-Mitra
port, genomics also holds “considerable potential for improving the health of the developing countries in the future” (WHO 2002: 105). As biobanks continue to be established worldwide, new and recurring ethical issues are put forward in the international arena. One such topic is benefit-sharing, which offers ways to address, on a small scale, existing global inequities, especially those related to the benefits and burdens of medical research. This paper attempts to address some of the concerns related to the development of benefit-sharing frameworks, particularly in the context of vulnerable populations, who typi
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