
doi: 10.1159/000051110
pmid: 11865922
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 multifactorial 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.
Ethics Committees, Genetic Research, Social Responsibility, Internationality, Research Subjects, Community Participation, Genetic Diseases, Inborn, Guidelines as Topic, Patents as Topic, Social Justice, Human Genome Project, Humans, Industry, Ethics, Institutional, Developing Countries, Biotechnology
Ethics Committees, Genetic Research, Social Responsibility, Internationality, Research Subjects, Community Participation, Genetic Diseases, Inborn, Guidelines as Topic, Patents as Topic, Social Justice, Human Genome Project, Humans, Industry, Ethics, Institutional, Developing Countries, Biotechnology
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