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基因研究中的知情同意、商品化与利益分享。

Consent, commodification and benefit-sharing in genetic research.

作者信息

Dickenson Donna

出版信息

Dev World Bioeth. 2004 Dec;4(2):109-24. doi: 10.1111/j.1471-8731.2004.00087.x.

Abstract

The global value of the biotechnology industry is now estimated at 17 billion dollars, with over 1300 firms involved as of the year 2000.(2) It has been said that 'What we are witnessing is nothing less than a new kind of gold rush, and the territory is the body.' As in previous gold rushes, prospectors are flooding into unexplored and 'wide open' territories from all over the world, with possible ramifications for exploitation of Third World populations. These territories are also the Wild West of bioethics insofar as the law has very little hold on them: existing medical and patent law, such as the Moore and Chakrabarty cases, exert little control over powerful economic interests in both the United States and Europe. In the absence of a unified and consistent law on property in the body, the focus is increasingly on refining the consent approach to rights in human tissue and the human genome, with sensitive and promising developments from the Human Genetics Commission and the Department for International Development consultation on intellectual property. These developments incorporate the views of vulnerable genetic communities such as Native Americans or some Third World populations, and should be welcomed because they recognise the power imbalance between such groups and First World researchers or firms. However, they also highlight the continued tension about what is really wrong with commodifying human tissue or the human genome. Where's the injustice, and can it be solved by a more sophisticated consent procedure?

摘要

目前,生物技术产业的全球价值估计为170亿美元,截至2000年,有超过1300家公司涉足该领域。(2) 有人说:“我们正在见证的无异于一场新型的淘金热,而这片领域就是人体。” 正如之前的淘金热一样,勘探者们正从世界各地涌入未被探索的 “广阔开放” 领域,这可能对第三世界人口的 exploitation 产生影响。就法律对这些领域几乎没有约束力而言,它们也是生物伦理学的 “狂野西部”:现有的医学和专利法,比如摩尔案和查克拉巴蒂案,对美国和欧洲强大的经济利益集团几乎没有控制力。在缺乏关于人体财产的统一且一致的法律的情况下,重点越来越多地放在完善对人体组织和人类基因组权利的同意方式上,人类遗传学委员会以及国际发展部关于知识产权的磋商取得了一些敏感且有前景的进展。这些进展纳入了美洲原住民或一些第三世界人口等弱势遗传群体的观点,应该受到欢迎,因为它们认识到了这些群体与第一世界研究人员或公司之间的权力不平衡。然而,它们也凸显了在将人体组织或人类基因组商品化到底错在哪里这一问题上持续存在的紧张关系。不公正体现在哪里,能否通过更复杂的同意程序来解决?

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