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.

1.
Silver LM: Remaking Eden. New York, Avon Books, 1997.
2.
Stolberg SG; Gerth J: How Companies Stall Generics and Keep Themselves Healthy. The New York Times, Sunday July 23, 2000, A-12, A-13.
3.
Council for International Organization of Medical Sciences (CIOMS): Declaration of Inuyama, 1991.
4.
UNEP: Convention on Biological Diversity, 1992.
5.
HUGO: Statement on The Principled Conduct of Genetic Research, 1996.
6.
UNESCO: Universal Declaration on the Human Genome and Human Rights, Article 19, 1997.
7.
WHO: Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services, Geneva, 1998, pp 5, 14.
8.
WHO: Draft Guidelines in Bioethics, Principle 8, 1999.
9.
Kolata G: Sharing of Profits is Debated as the Value of Tissue Rises. The New York Times, May 15, 2000, A1.
10.
Leon P: Human Genetics Group, Benefit-sharing of Gene Patents: The Case of Costa Rica, pers commun, July 2000.
11.
National Cancer Institute (United States, National Institutes of Health): Cancerlit, 2000.
12.
Desilets G: Heart Study Subjects Aim to Serve Public Good, Not Just Private Profits, The Boston Globe, July 15, 2000, p A15.
13.
Intergovernmental Commission on Genetic Resources in Food and Agriculture (CGFRA).
14.
Foster MW, Bernstein D, Carter TH: A model agreement for genetic research in socially identifiable populations. Am J Hum Genet 1998;63:696–702.
15.
Editor: Population Genetics Deal. Nature Biotechnol 2000;18:366.
Copyright / Drug Dosage / Disclaimer
Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.
You do not currently have access to this content.