Biology Reference
In-Depth Information
While other guidelines and instruments that are outlined in this chapter include
benefit sharing, the entire HUGO statement is focused on this issue. The state-
ment is therefore very helpful in mapping out benefit-sharing options for the use
of human biological resources. Most importantly, it provides useful discussions on
extending the concept of benefit beyond therapeutic benefits for those participat-
ing in clinical trials. This is useful because, as mentioned above, many research
settings are not linked to the clinical trial context. The case of the Majengo slum
sex workers (see Chap. 5 ) is a good example. The Hugo statement is thus viewed
by many scholars as a clear statement on benefit sharing in the context of human
biological resources (see HUGO Ethics Committee 2000b ; Knoppers et al. 2000 ;
Weijer 2000 ).
3.5.1 Benefits and Beneficiaries
The concepts of property ownership and communities as beneficiaries are both
controversial when used in the context of human biological resources. In this
regard the HUGO statement's recognition that the human genome is a part of the
common heritage of humanity that should benefit all humanity could be used to
support an argument against benefit sharing for human biological resources.
A plausible argument here would be that there is no sense of individual ownership
in such resources that can be used to support a basis for sharing benefits with the
donors. The unique situation is that
increased knowledge concerning the molecular basis of human disease is in itself a benefit
and this knowledge could, at a later stage, result in new therapeutic modalities. Progress in
diagnostics and the prevention or treatment of disease is another benefit to society at large,
as well as to patients and their families (Chadwick and Berg 2001 : 319).
In the same vein, arguments have been put forward against benefit sharing with
genetic sample donors, especially when it comes to the pharmaceutical industry
funding genetic research.
Intuitively, sharing of economic benefits seems morally desirable, but it is also
difficult to identify any specific reason why the pharmaceutical industry should
be obliged to share their revenue from genomic research. The populations, fami-
lies and individuals whose samples have formed the basis for new products and
revenue, have not themselves done anything to make their samples 'valuable'. 'If
anything, their samples have become valuable because of work conducted by sci-
entists' (Chadwick and Berg 2001 : 320).
Why, then, one could ask, has the CBD been adopted by 193 state parties? It
demands exactly that - the sharing of benefits with resource (e.g. plant DNA)
providers. However, here one could argue that beneficiaries (such as indigenous
communities or governments) are rewarded for their contribution to resource
management. Resource providers are at the same time owners, managers and/or
custodians of genetic resources (IISD and Stratos Inc. 2007 : 14). One cannot say
the same about the donors of human genetic resources. In addition, the traditional
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