Biology Reference
In-Depth Information
Chapter 5
Donating Human Samples: Who Benefits?
Cases from Iceland, Kenya and Indonesia
Julie Cook Lucas, Doris Schroeder, Gardar Arnason, Pamela Andanda,
Joshua Kimani, Veronique Fournier and Meena Krishnamurthy
Abstract Benefit sharing involving human genetic resources is an unresolved
topic. Some argue that participation in scientific research should always be altru-
istically motivated, which is how access to human genetic resources has histori-
cally been governed in affluent nations. However, uncritically transferring the
altruism model to developing countries leads to the emergence of serious exploita-
tion issues. This chapter illustrates the potential for exploitation and other associ-
ated ethical concerns through a discussion of three cases: The Icelandic deCODE
biobank for genetic research; the sex workers from Nairobi, Kenya, whose sam-
ples are used for ongoing HIV/AIDS research; and the Indonesian government's
J. C. Lucas ( * ) · D. Schroeder
UCLAN, Centre for Professional Ethics, Brook 317, Preston PR1 2HE, UK
e-mail: jmlucas@uclan.ac.uk
D. Schroeder
e-mail: dschroeder@uclan.ac.uk
G. Arnason
Institut für Philosophie, Leibniz Universität Hannover, Im Moore 21, 30167 Hannover,
Germany
e-mail: gardar.arnason@philos.uni-hannover.de
P. Andanda
School of Law, University of the Witwatersrand, Private Bag 3 Wits 2050, Johannesburg,
South Africa
e-mail: Pamela.Andanda@wits.ac.za
J. Kimani
Kenya AIDS Control Project, Institute of Tropical and Infectious Diseases, College of Health
Sciences, University of Nairobi, 19676-00202, Nairobi, Kenya
e-mail: Jkimani@csrtkenya.org
V. Fournier
Centre d'éthique Clinique, Hôpital Cochin, 27 rue du Fbg Saint Jacques, 75014 Paris, France
e-mail: veronique.fournier@cch.aphp.fr
M. Krishnamurthy
Department of Philosophy, Centre for Professional and Applied Ethics, University of
Manitoba, 465 University College, Winnipeg MB R3T 2N2, Canada
e-mail: Meena.Krishnamurthy@ad.umanitoba.ca
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