Global Genes, Local Concerns
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Global Genes, Local Concerns

Legal, Ethical, and Scientific Challenges in International Biobanking

Edited by Timo Minssen, Janne R Herrmann and Jens Schovsbo

With interdisciplinary chapters written by lawyers, sociologists, doctors and biobank practitioners, Global Genes, Local Concerns identifies and discusses the most pressing issues in contemporary biobanking. Addressing pressing questions such as how do national biobanks best contribute to translational research and how could academic and industrial exploitation, ownership and IPR issues be addressed and facilitated, this book contributes to the continued development of international biobanking by highlighting and analysing the complexities in this important area of research.
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Chapter 9: Exploitation and vulnerabilities in consent to biobank research in developing countries

Nana Cecilie Halmsted Kongsholm

Abstract

Biobanks hold a great potential for research into a large number of health issues and developments - a potential that is magnified even more when biobanks collaborate internationally. To facilitate international collaboration and overcome issues of the often very different legal and regulative landscapes between countries, many efforts of harmonization of biobank guidelines - particularly with respect to the issue of consent to participation - have been launched. However, such efforts to harmonize guidelines risk overlooking or glossing over local factors that may compromise consent in specific contexts, particularly when research is conducted in developing countries, which risks enabling exploitative research interactions. In this chapter it is argued that harmonization efforts with a sole focus on consent may overlook two issues: (1) even when there is valid consent, there may still be exploitation; (2) in concrete research contexts in developing countries there may be local social and cultural factors that compromise individuals’ consent and make them particularly vulnerable to potentially exploitative research interactions. To illustrate, the author draws on findings from an interview study conducted with biobank donors in rural Pakistan, carried out under the Global Genes, Local Concerns project.

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