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Informed Consent and Benefit Sharing in Genetic Research and Biobanking in India

Some Common Impediments in Practice
  • Prasanna Kumar Patra
  • Margaret Sleeboom-Faulkner
Conference paper
Part of the Veröffentlichungen des Instituts für Deutsches, Europäisches und Internationales Medizinrecht, Gesundheitsrecht und Bioethik der Universitäten Heidelberg und Mannheim book series (IMGB, volume 33)

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.

Keywords

Genetic Research Tribal Community Benefit Sharing Biobanking Research Human Genome Diversity Project 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

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Copyright information

© Springer-Verlag Berlin Heidelberg 2012

Authors and Affiliations

  • Prasanna Kumar Patra
    • 1
  • Margaret Sleeboom-Faulkner
    • 1
  1. 1.Department of AnthropologyUniversity of SussexSussexUK

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