Sharing the benefits of genetic resources: from biodiversity to human genetics.
Benefit sharing aims to achieve an equitable exchange between the granting of access to a genetic resource and the provision of compensation. The Convention on Biological Diversity (CBD), adopted at the 1992 Earth Summit in Rio de Janeiro, is the only international legal instrument setting out obligations for sharing the benefits derived from the use of biodiversity. The CBD excludes human genetic resources from its scope, however, this article considers whether it should be expanded to include those resources, so as to enable research subjects to claim a share of the benefits to be negotiated on a case-by-case basis. Our conclusion on this question is: 'No, the CBD should not be expanded to include human genetic resources.' There are essential differences between human and non-human genetic resources, and, in the context of research on humans, an essentially fair exchange model is already available between the health care industry and research subjects. Those who contribute to research should receive benefits in the form of accessible new health care products and services, suitable for local health needs and linked to economic prosperity (e.g. jobs). When this exchange model does not apply, as is often the case in developing countries, individually negotiated benefit sharing agreements between researchers and research subjects should not be used as 'window dressing'. Instead, national governments should focus their finances on the best economic investment they could make; the investment in population health and health research as outlined by the World Health Organization's Commission on Macroeconomics and Health; whilst international barriers to such spending need to be removed.
Schroeder
Doris
D
Centre for Professional Ethics, University of Central Lancashire, Preston, United Kingdom.
Lasén-Díaz
Carolina
C
D016915:AIDS Vaccines; D044822:Biodiversity; D002986:Clinical Trials as Topic; D004247:DNA / Q000191:economics; D019049:Developed Countries; D003906:Developing Countries; D036281:Genetic Research / Q000191:economics / Q000941:ethics* / Q000331:legislation & jurisprudence; D006806:Human Rights; D006801:Humans; D007258:Informed Consent; D007391:International Cooperation; D044382:Population Groups / Q000235:genetics; D011640:Public Policy; D012935:Social Justice; D014019:Tissue Donors; D014480:United Nations
D016915:AIDS Vaccines; D004247:DNA