HUGO urges genetic benefit-sharing.
In view of the fact that for-profit enterprise exceeds public expenditures on genetic research and that benefits from the Human Genome Project may accrue only to rich people in rich nations, the HUGO Ethics Committee discussed the necessity of benefit-sharing. Discussions involved case examples ranging from single-gene to multi-factorial disorders and included the difficulties of defining community, especially when multifactorial diseases are involved. The Committee discussed arguments for benefit-sharing, including common heritage, the genome as a common resource, and three types of justice: compensatory, procedural, and distributive. The Committee also discussed the importance of community participation in defining benefit, agreed that companies involved in health have special obligations beyond paying taxes, and recommended they devote 1-3% of net profits to healthcare infrastructure or humanitarian efforts.
D001709:Biotechnology; D003256:Community Participation; D003906:Developing Countries; D017041:Ethics Committees; D004991:Ethics, Institutional; D030342:Genetic Diseases, Inborn; D036281:Genetic Research; D017408:Guidelines as Topic; D016045:Human Genome Project; D006801:Humans; D007221:Industry; D038622:Internationality; D010330:Patents as Topic; D035842:Research Subjects; D012935:Social Justice; D012941:Social Responsibility