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 rang...

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Bibliographic Details
Published in:Community genetics 2000, Vol.3 (2), p.88-92
Main Authors: Knoppers, Bartha Maria, Chadwick, Ruth, Takebe, Hiraku, Berg, Kare, Cantu, Jose Maria, Daar, Abdallah S., Engels, Eva Marie, Kirby, Michael, Macer, Darryl, Murray, Thomas H., Qiu, Ren-Zong, Verma, Ishwar C., Wertz, Dorothy C.
Format: Article
Language:English
Subjects:
Bioethics
Biotechnology
Community involvement
Community Participation
Developing Countries
Ethics Committees
Ethics, Institutional
Genetic Diseases, Inborn
Genetic Research
Guidelines as Topic
Human Genome Project
Humans
Industry
Internationality
Patents as Topic
Research Subjects
Social Justice
Social Responsibility
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Summary: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.
ISSN:1422-2795
1662-4246
1422-2833
1662-8063
DOI:10.1159/000051110