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分享遗传资源的益处:从生物多样性到人类遗传学。

Sharing the benefits of genetic resources: from biodiversity to human genetics.

作者信息

Schroeder Doris, Lasén-Díaz Carolina

机构信息

Centre for Professional Ethics, University of Central Lancashire, Preston, United Kingdom.

出版信息

Dev World Bioeth. 2006 Dec;6(3):135-43. doi: 10.1111/j.1471-8847.2006.00148.x.

Abstract

Benefit sharing aims to achieve an equitable exchange between the granting of access to a genetic resource and the provision of compensation. The Convention on Biological Diversity (CBD), adopted at the 1992 Earth Summit in Rio de Janeiro, is the only international legal instrument setting out obligations for sharing the benefits derived from the use of biodiversity. The CBD excludes human genetic resources from its scope, however, this article considers whether it should be expanded to include those resources, so as to enable research subjects to claim a share of the benefits to be negotiated on a case-by-case basis. Our conclusion on this question is: 'No, the CBD should not be expanded to include human genetic resources.' There are essential differences between human and non-human genetic resources, and, in the context of research on humans, an essentially fair exchange model is already available between the health care industry and research subjects. Those who contribute to research should receive benefits in the form of accessible new health care products and services, suitable for local health needs and linked to economic prosperity (e.g. jobs). When this exchange model does not apply, as is often the case in developing countries, individually negotiated benefit sharing agreements between researchers and research subjects should not be used as 'window dressing'. Instead, national governments should focus their finances on the best economic investment they could make; the investment in population health and health research as outlined by the World Health Organization's Commission on Macroeconomics and Health; whilst international barriers to such spending need to be removed.

摘要

惠益分享旨在实现获取遗传资源与提供补偿之间的公平交换。1992年在里约热内卢地球峰会上通过的《生物多样性公约》(CBD)是规定分享利用生物多样性所获惠益义务的唯一国际法律文书。然而,《生物多样性公约》将人类遗传资源排除在其范围之外,本文探讨是否应将其扩大以涵盖这些资源,以便研究对象能够要求分享将逐案协商的惠益。我们对这个问题的结论是:“不,《生物多样性公约》不应扩大到涵盖人类遗传资源。”人类遗传资源与非人类遗传资源之间存在本质区别,而且在人类研究背景下,医疗行业与研究对象之间已经存在一种基本公平的交换模式。为研究做出贡献的人应以可获取的、适合当地健康需求并与经济繁荣(如就业)相关联的新医疗产品和服务的形式获得惠益。当这种交换模式不适用时,如在发展中国家经常出现的情况,研究人员与研究对象之间个别协商的惠益分享协议不应被用作“粉饰门面”。相反,各国政府应将财政资金集中用于他们能够进行的最佳经济投资;即世界卫生组织宏观经济与卫生委员会所概述的对人群健康和健康研究的投资;同时需要消除此类支出的国际障碍。

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