Promoting an Inclusive Approach to Benefit Sharing: Expanding the Scope of the CBD? - Benefit Sharing - page 167

and efficiently, while promoting genuine international cooperative biomedical and
pharmaceutical research, therefore remains a major issue.
7.4 ABS in Human Genetic Resources
Notwithstanding the complexity of identifying the origin of the 'biological
resources' that constitute the raw material and the focal point of ABS guidelines,
there is growing acceptance that some kind of benefit sharing should take place
when human genetic material is involved (Schroeder and Lasen-Diaz 2006 ). We
can find examples of this in international debates and guidelines, as outlined in
Chap. 3 . For instance, the Statement on Benefit Sharing by the Hugo Ethics
Committee ( 2000 ), the WHO report Genetic databases: Assessing the benefits
and the impact on human and patient rights (WHO 2003 ) and the UNESCO
Declaration on Human Genetic Data (UNESCO 2003 ) have forcefully called for
benefit sharing with participating populations in genetic studies. What constitutes
benefit sharing in such cases is widely debated, as it may vary depending on the
needs, values and cultural parameters in a given case. What is clear, however, is
that benefit sharing is considered a key aspect of research involving human beings
and human genetic material. Yet, because there are currently no legally binding
obligations requiring ABS agreements to be concluded in such cases, there is lit-
tle evidence that this is actually done in any formal or meaningful manner any-
where in the world. While research groups prefer to offer participating individuals
in research studies (which are usually of a clinical nature) free health care as a
'benefit' (see Chap. 5 ), formal arrangements between the parties appear to be rare.
One exception is the formal benefit-sharing agreement that involved a genet-
ics research company, a drug manufacturer and the government of Iceland. In this
case the research company planned to develop a database of the Icelandic popu-
lation to identify particular genetic polymorphisms that could eventually lead to
drug development. Interestingly, the plans for the database were ruled unconsti-
tutional, partly on the basis of issues of informed consent and privacy, and the
result of the remaining scientific collaboration so far has been disappointing, with
no commercial developments. The case, which is described in detail in Chap. 5 ,
has nevertheless opened up new perspectives on ABS agreements in terms of basic
research in population genetics studies.
7.5 Exploring the Way Forward
The CBD is an important global agreement that provides national sovereignty
over the biological resources found within national geographical borders, and
spells out that any commercial benefit derived from these resources should,
among other things, acknowledge the supplier country and/or indigenous and local