Taking aims seriously: repository research and limits on the duty to return individual research findings.

Taking aims seriously: repository research and limits on the duty to return individual research findings.
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DOI:
10.1038/gim.2012.5
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发表时间:
2012-04
期刊:
Genetics in medicine : official journal of the American College of Medical Genetics
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其他
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大多数关于研究人员将偶然发现或研究结果返回给研究参与者或存储库贡献者的责任的讨论未能为这种责任提供足够的理论基础。归还发现是一种积极的责任,一种帮助他人的责任。通常情况下,这种义务被限定得很窄,这样,只有当帮助对帮助者构成很少或没有风险或负担,并且不妨碍她的合法目的时,帮助才是一种义务。在目前的预算和人员限制下,在现有的信息技术条件下,使用储存库材料的个别研究结果的例行返回将对科学事业造成重大负担,并将严重妨碍科学家和标本/数据提供者的目标。在大多数情况下,研究人员帮助存储库贡献者的有限职责可能可以通过一些比返回单个发现要求更低的操作来完成。此外,责任回报问题应该被分析为(可能)现在帮助一些贡献者和(可能)帮助更多的人之间的冲突,这些人将来会从研究产生的知识中受益。
Most discussions of researchers’ duties to return incidental findings or research results to research participants or repository contributors fail to provide an adequate theoretical grounding for such duties. Returning findings is a positive duty, a duty to help somebody. Typically, such duties are specified narrowly such that helping is only a duty when it poses little or no risk or burden to the helper and does not interfere with her legitimate aims. Under current budgetary and personnel constraints, and with currently available information technology, routine return of individual findings from research using repository materials would constitute a substantial burden on the scientific enterprise and would seriously frustrate the aims of both scientists and specimen/data contributors. In most cases, researchers’ limited duties to help repository contributors probably can be fulfilled by some action less demanding than returning individual findings. Furthermore, the duty-to-return issue should be analyzed as a conflict between (possibly) helping some contributors now and (possibly) helping a greater number of people who would benefit in the future from the knowledge produced by research.
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