Biology Reference
In-Depth Information
Neither the Declaration of Helsinki nor CIOMS focuses especially on the pro-
viders of human genetic resources. There is, however, one document that does: the
HUGO Ethics Committee Statement on Benefit Sharing.
3.5 HUGO Ethics Committee Statement on Benefit Sharing
The Human Genome Organisation (HUGO) is an international scientific body
which aims at encouraging public debate and providing information and advice on
the scientific, ethical, social, legal and commercial implications of human genome
projects.
In its Statement on Benefit Sharing (
2000a
), the HUGO Ethics Committee
made six recommendations:
1) that all humanity share in, and have access to, the benefits of genetic research.
2) that benefits not be limited to those individuals who participated in such research.
3) that there be prior discussion with groups or communities on the issue of
benefit-sharing.
4) that even in the absence of profits, immediate health benefits as determined by com-
munity needs could be provided.
5) that at a minimum, all research participants should receive information about general
research outcomes and an indication of appreciation.
6) that profit-making entities dedicate a percentage (e.g. 1% - 3%) of their annual net
profit to healthcare infrastructure and/or to humanitarian efforts (HUGO Ethics
Committee
2000a
).
These recommendations are ambitious and far-reaching. Stating that all humanity
should have access to the benefits of genetic research and that benefits should not be
limited to the individuals who participate in research implies a very broad view of
benefit sharing. This is also indicated in the suggestion that some health benefits
ought to be provided even if the relevant research does not generate any profits, and
that a percentage of annual net profits should be donated. As discussed in
Chap. 2
,
benefit sharing can be derived from concepts of justice in exchange or distributive
justice.
15
In this topic we focus on the former, but it is worth noting that the HUGO
Ethics Committee Statement on Benefit Sharing advocates the latter.
It is also worth noting that the requirement to share information with research
participants and provide feedback on results was included in the HUGO state-
ment as early as 2000. Such a requirement was only included in the Declaration of
Helsinki in 2008 and is not discussed at all in the CIOMS guidelines. The require-
ment of prior discussion with groups or communities on the issue of benefit shar-
ing shows some kinship with the CBD, as it implies both the obtaining of prior
informed consent and the negotiation of mutually agreed terms, albeit less for-
mally expressed.
15
For a detailed discussion of these two concepts of justice in the context of benefit sharing, see
Schroeder and Pogge (
2009
: 274).
