Biology Reference
In-Depth Information
decision to withhold virus samples from the World Health Organization in order
to achieve fairer benefit sharing. Public attention is captured more easily by global
pandemics, but the case of the Nairobi sex workers illustrates that the exploitation
issues raised on the international stage by the Indonesian government are not lim-
ited to virus sharing. A framework for equitable access to human genetic resources
is urgently needed, but in order to ensure justice, this needs to be accompanied by
sustained attention to benefit sharing.
Keywords
Benefit sharing • Icelandic biobank • Majengo sex workers •
Indonesian virus samples • Exploitation • Human genetic resources • HIV/AIDS
5.1 Introduction
Since the adoption of the Convention on Biological Diversity (CBD) in 1992, ben-
efit sharing for traditional knowledge as well as non-human biological resources
as well as outstanding challenges. By contrast, benefit sharing involving human
genetic/biological resources is a topic which is essentially unresolved. As the CBD
specifically excluded human resources from its remit in 1995 (see
Chap. 3
), these
remain in a legal vacuum, as far as international, binding legislation is concerned.
It could be argued that participation in medical research should only ever be
altruistically motivated: that those who contribute to research act for the benefit
and in the interests of others, and do not expect any specific rewards in the form of
benefit sharing. This is particularly pertinent for research which involves minimal
risk and requires large numbers of participants, for example in recruitment of par-
ticipants to the growing number of biobanks,
1
or in genetic research (Williams and
Schroeder
2004
; Merchant
2005
: 168, note 56). Some even maintain that people
should
participate in such research, as human beings have a duty of solidarity with
others when it comes to health (HUGO Ethics Committee
2000a
) or, in other
words, a 'duty to facilitate research progress and to provide knowledge that could
be crucial to the health of others' (Berg and Chadwick
2001
). We will see in
Chap. 8
, however, that this model, which is widely accepted in affluent nations,
cannot be transferred to developing countries without the emergence of serious
exploitation issues. Some form of benefit sharing for human biological resources
1
For example, the UK Biobank, a research project which collects health, medical and lifestyle
information from large numbers of people, together with blood, saliva and urine samples in order
to track participants' long term health, states in its information letter to potential participants,
'Taking part is not intended to help you directly, but it should give future generations a much bet-
ter chance of living their lives free of diseases that disable and kill.'
http://www.ukbiobank.ac.uk/
