Fair for Women? A Gender Analysis of Benefit Sharing - Benefit Sharing - page 127

barrier to women's involvement is their marginalization in decision-making
processes. 2
In terms of simple numbers men dominated all the benefit-sharing decision-
making bodies and the negotiations with outside parties in all five cases. Women
from the relevant communities were in some cases not included in any research-
related negotiations.
The female sex workers In Majengo, Nairobi, (see Chap. 5 ) have been identi-
fied elsewhere as a multiply vulnerable community in terms of a host of interna-
tional ethical guidelines (Andanda and Lucas 2007 : 18). They are the main sources
of the biological materials for the HIV/AIDS research programme, but historically
have been completely excluded from the research negotiations (beyond giving
their individual consent to participate).
[R]outine issues of negotiation and decision making related to the conduct of research
studies only involved researchers and administrators from the relevant universities and
institutions …. There was no formal inclusion of representatives from the sex workers in
any of the negotiations (Andanda and Lucas 2007 : 9).
It is clear that they have no right of ownership to any knowledge generated by
the studies that have used their medical data, blood and other bodily samples for
25 years, or to ownership of any knowledge that will be generated by the research
programme, including a vaccine, if one is ever developed (Andanda and Lucas
2007 ; see also Andanda 2009 ). Currently, as discussed in Chap. 5 , they do not
even have a clear right to free access to such a vaccine, should one be developed.
This is despite the significance of their contribution to HIV research.
The few sex workers who have not also seroconverted over the years, despite repeated
exposures to HIV, have provided the scientific world with a natural model of HIV resist-
ance, affirming that a HIV vaccine is a reality if we had the right tools to unravel the
mysteries. 3
In the Nigerian case, (see Chap. 4 ) the use of traditional knowledge was medi-
ated through one individual male traditional health practitioner, Rev. Ogunyale,
who was the only community representative involved in the negotiations
(Wambebe 2007 ). Before Rev. Ogunyale died he set up a foundation to receive his
royalties from the benefit-sharing agreement. It is recognized however that most
traditional medical practitioners are elderly women. 4 It is therefore reasonable to
assume that as a group women made a substantial historical contribution to the
development of the traditional knowledge and technology within Nigeria that
eventually resulted in Niprisan/Nicosan, and yet this role is not recognized in the
benefit-sharing agreements. 5
2 This analysis is based on Alvarez Castillo and Lucas ( 2009 : 141).
3 Personal communication from Dr Joshua Kimani, November 2010.
4 Personal communication from Charles Wambebe, June 2008.
5 Concern has been expressed that benefit sharing should have taken place with the wider com-
munity in which Rev. Ogunyale lived (Wambebe 2007 : 13) (Lucas et al. Chap. 4 ).