Informed consent and benefit sharing in genetic research and biobanking in India: some common impediments in practice

Sleeboom-Faulkner, Margaret and Patra, Prasanna Kumar (2012) Informed consent and benefit sharing in genetic research and biobanking in India: some common impediments in practice. In: Dabrock, Peter, Taupitz, Jochen and Ried, Jens (eds.) Trust in biobanking. dealing with ethical, legal and social issues in an emerging field of biotechnology. Springer, London & New York, pp. 237-256. ISBN 9783540788447

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Abstract

In this paper an attempt is made to understand common impediments in the application of two bioethical principles – informed consent and benefit sharing – in genetic and biobanking research in field situations in India. These evolving principles are discussed and addressed in contemporary national and international bioethical guidelines that reflect the nature of the population and technological systems that they deal with. Notably, the importance of these two principles is that they aim, on the one hand, to protect research participants from exploitation, harm and injustice and, on the other, to impose legal and ethical obligations upon those individuals and institutions conducting research and/or business enterprises. The major considerations that will be addressed by this paper are: firstly, whether there is a true, valid and ‘informed’ consent procedure that will be practicable, particularly in illiterate, resource-poor and marginalized social settings; and secondly, whether human genetic materials can be considered as resources or property and promoted for benefit sharing arrangements, as has been the case with respect to non-human genetic materials. The study draws on primary information collected in India during December 2006 and May 2007.

Item Type: Book Section
Schools and Departments: School of Global Studies > Anthropology
Subjects: G Geography. Anthropology. Recreation
Depositing User: Nadya Herrera Catalan
Date Deposited: 10 Nov 2015 07:29
Last Modified: 10 Nov 2015 07:29
URI: http://sro.sussex.ac.uk/id/eprint/57845
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