Genes, race and research ethics: who's minding the store?
Genes, race and research ethics: who's minding the store?
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DOI：
10.1136/jme.2007.021295
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发表时间：
2008-06-01
影响因子：
4.1
通讯作者：
Megyesi, M. S.
中科院分区：
文献类型：
--
作者：
Hunt, L. M.;Megyesi, M. S.
背景资料：寻找种族/民族群体之间的遗传变异来解释不同的疾病易感性和药物反应引起了尖锐的批评，挑战了在遗传学研究中使用种族/民族作为变量的适当性，因为这些类别是社会结构而不是生物分类。目的：为了深入了解一组遗传科学家如何概念化和使用种族/在他们的工作和他们的战略管理伦理问题和这种做法的后果的种族变量。方法：深入的半结构化访谈进行了有目的的样本30遗传研究人员谁使用种族/民族变量在他们的研究。标准的定性方法的内容analysis.Results：大多数的遗传学研究人员认为种族/民族的变量是任意的，定义很差，反过来作为科学不足。然而，大多数人为它们的使用辩护，将它们描述为通往“即将到来的医学进步”的有用的代理变量。没有开发公开的策略来解决这些不足之处，许多人反而断言，科学将不可避免地纠正自己，并说，同时研究人员应该“小心”的语言选择报告findings.Conclusions：虽然在遗传学研究中使用种族/民族变量的合法性和后果已被广泛批评，道德监督留给遗传研究人员自己。考虑到我们在这些研究人员中发现的关于他们使用这些变量的一般性和不精确性，他们似乎没有为这样的事业做好准备。研究伦理学家似乎必须向前迈进，制定具体的政策和做法，以确保关于人口群体之间生物差异的遗传研究的科学完整性。
Background: The search for genetic variants between racial/ethnic groups to explain differential disease susceptibility and drug response has provoked sharp criticisms, challenging the appropriateness of using race/ethnicity as a variable in genetics research, because such categories are social constructs and not biological classifications.Objectives: To gain insight into how a group of genetic scientists conceptualise and use racial/ethnic variables in their work and their strategies for managing the ethical issues and consequences of this practice.Methods: In-depth semi-structured interviews were conducted with a purposive sample of 30 genetic researchers who use racial/ethnic variables in their research. Standard qualitative methods of content analysis were used.Results: Most of the genetic researchers viewed racial/ethnic variables as arbitrary and very poorly defined, and in turn as scientifically inadequate. However, most defended their use, describing them as useful proxy variables on a road to "imminent medical progress''. None had developed overt strategies for addressing these inadequacies, with many instead asserting that science will inevitably correct itself and saying that meanwhile researchers should "be careful'' in the language chosen for reporting findings.Conclusions: While the legitimacy and consequences of using racial/ethnic variables in genetics research has been widely criticised, ethical oversight is left to genetic researchers themselves. Given the general vagueness and imprecision we found amongst these researchers regarding their use of these variables, they do not seem well equipped for such an undertaking. It would seem imperative that research ethicist move forward to develop specific policies and practices to assure the scientific integrity of genetic research on biological differences between population groups.