Literature DB >> 11865922

HUGO urges genetic benefit-sharing.

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Abstract

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.

Entities:  

Keywords:  Biomedical and Behavioral Research; Genetics and Reproduction

Mesh:

Year:  2000        PMID: 11865922     DOI: 10.1159/000051110

Source DB:  PubMed          Journal:  Community Genet        ISSN: 1422-2795


  5 in total

Review 1.  Patenting human genes: when economic interests trump logic and ethics.

Authors:  Eike-Henner W Kluge
Journal:  Health Care Anal       Date:  2003-06

Review 2.  What Do the Various Principles of Justice Mean Within the Concept of Benefit Sharing?

Authors:  Bege Dauda; Yvonne Denier; Kris Dierickx
Journal:  J Bioeth Inq       Date:  2016-01-29       Impact factor: 1.352

3.  Genomics governance: advancing justice, fairness and equity through the lens of the African communitarian ethic of Ubuntu.

Authors:  Nchangwi Syntia Munung; Jantina de Vries; Bridget Pratt
Journal:  Med Health Care Philos       Date:  2021-04-02

4.  Benefit sharing: an exploration on the contextual discourse of a changing concept.

Authors:  Bege Dauda; Kris Dierickx
Journal:  BMC Med Ethics       Date:  2013-09-12       Impact factor: 2.652

5.  Planning for translational research in genomics.

Authors:  Naomi Hawkins; Jantina de Vries; Paula Boddington; Jane Kaye; Catherine Heeney
Journal:  Genome Med       Date:  2009-09-29       Impact factor: 11.117

  5 in total

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