Biology Reference
In-Depth Information
research agenda, that the research is tailored to local research needs, and
that the resulting product or intervention will be made available at affordable
prices in the host country.
10.7 Women and Benefit Sharing
Fair benefit sharing has a process element and a substantive element, as noted
above. Our main recommendation - that access to health care is a reasonable
benefit in return for the donation of human biological samples - is a substantive
recommendation. Suggesting how women should be integrated into decision-mak-
ing processes would be a procedural recommendation. But first, a clarification is
necessary. Benefit-sharing discussions are heavily influenced by policy-makers,
practitioners and academics working on CBD-related issues. The CBD, in many
instances, requires case-by-case benefit-sharing negotiations between those who
access resources and those who provide such access. Usually the resource provid-
ers are groups, for example a group of traditional knowledge holders, such as the
San of southern Africa in the
Hoodia
case described in
Chap. 4
.
Traditionally, research governed through the Declaration of Helsinki or similar
ethics guidelines had no community negotiation element at all. Autonomous choices,
it was assumed, were to be made by each individual (often a patient), who had to
decide whether to take part in a research study after informed consent procedures
started by another individual (usually a doctor or medical researcher). Negotiations
about benefit sharing were not, and are not today, a part of informed consent pro-
cesses. One could describe these processes as 'take it or leave it' with regard to ben-
efits offered and obtained. This approach has seen some changes in recent years,
especially in certain African and South American countries, where,
in addition
to
informed consent obtained from an individual, obtaining permission from community
leaders has become a more common requirement. Diallo et al. (
2005
) describe it thus:
The realization of the need for community consent, or more accurately community per-
mission, for research has occurred relatively recently. Practical experience with it is
scarce. … The process [of obtaining community permission] had 6 steps: (1) a study of
the community, (2) an introductory meeting with leaders, (3) formal meetings with lead-
ers, (4) personal visits with leaders, (5) meetings with traditional health practitioners, and
(6) recognition that obtaining permission is a dynamic process. … Far from competing
with the individual informed consent process, the process of obtaining community per-
mission both initiated and facilitated the process of disclosure for individual informed
consent.
We support the approach of Diallo et al. to obtaining community permission and
would like to concentrate here on the involvement of women. Ensuring that benefit
sharing is fair to women requires attention to both the outcome and the process. In
a just and fair outcome, women would be allocated their rightful share of benefits
and assured of full participation at all levels and in all aspects of the decision-making
process. In addition to the policies outlined in
Chap. 6
increasing international
