Tackling community concerns about commercialisation and genetic research: A modest interdisciplinary proposal
Tackling community concerns about commercialisation and genetic research: A modest interdisciplinary proposal
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DOI：
10.1016/j.socscimed.2006.08.028
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发表时间：
2007-01-01
影响因子：
5.4
通讯作者：
Hunter, Kathryn G.
中科院分区：
文献类型：
--
作者：
Haddow, Gillian;Laurie, Graeme;Hunter, Kathryn G.
近年来，DNA数据库的创建有所增加，有望为个人和人群带来一系列健康益处。伴随这一发展而来的是对这类藏品的伦理、法律和社会方面的兴趣和关注。在政策解决方案方面，这些辩论的焦点大多集中在同意、保密和研究治理等问题上。然而，还有更广泛的问题，例如与商业化有关的问题，这些焦点无法充分解决。在本文中，我们通过考虑10个焦点小组对苏格兰一代（苏格兰第一个国家遗传数据库）的看法，重点关注DNA数据库所承诺的健康财富效益。与之前的研究一样，我们对公众和利益相关者对DNA数据库看法的定性研究表明，将捐赠的样本和信息用于与财富相关的目的（即私人利润）的前景，无论是否有相关的健康益处，都会引起相当大的反应。虽然健康与财富的利益不是相互排斥的理想，但趋势是将“公共”利益完全视为与健康有关，而对资助者和/或研究人员的“私人”商业利益被认为是必要的回报。我们主张采取一种不那么两极分化的方法，重新考虑“公共利益”的含义，并质疑商业利益的排他性。我们相信，通过动员草根解决方案，即“利益分享”或“利润回报”，可以实现迁就。我们提出了一个具有实用主义的法律框架的社会信息模型，它认真回应了公众的关注。(c) 2006 Elsevier Ltd.版权所有。
In recent years, there has been a rise in the creation of DNA databases promising a range of health benefits to individuals and populations. This development has been accompanied by an interest in, and concern for the ethical, legal and social aspects of such collections. In terms of policy solutions, much of the focus of these debates has been on issues of consent, confidentiality and research governance. However, there are broader concerns, such as those associated with commercialisation, which cannot be adequately addressed by these foci. In this article, we focus on the health-wealth benefits that DNA databases promise by considering the views of 10 focus groups on Generation Scotland, Scotland's first national genetic database. As in previous studies, our qualitative research on public/s and stakeholders' views of DNA databases show the prospect of utilising donated samples and information derived for wealth-related ends (i.e. for private profit), irrespective of whether there is an associated health-related benefit, arouses considerable reaction. While health-wealth benefits are not mutually exclusive ideals, the tendency has been to cast 'public' benefits as exclusively health-related, while 'private' commercial benefits for funders and/or researchers are held out as a necessary pay-off. We argue for a less polarised approach that reconsiders what is meant by 'public benefits' and questions the exclusivity of commercial interests. We believe accommodation can be achieved via the mobilisation of a grass roots solution known as 'benefit-sharing' or a 'profit pay-off. We propose a sociologically informed model that has a pragmatic, legal framework, which responds seriously to public concerns. (c) 2006 Elsevier Ltd. All rights reserved.