值得政策关注的调查遗传谱系实践:修改政策德尔菲的结果。

IF 4 2区 生物学 Q1 GENETICS & HEREDITY
PLoS Genetics Pub Date : 2025-01-16 eCollection Date: 2025-01-01 DOI:10.1371/journal.pgen.1011520
Christi J Guerrini, Louiza Kalokairinou, Jill O Robinson, Whitney Bash Brooks, Stephanie M Fullerton, Sara Huston, Jacklyn Dahlquist, Diana Madden, Norah Crossnohere, Nicola Campoamor, John F P Bridges, Amy L McGuire
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引用次数: 0

摘要

一种被称为调查基因谱系(IGG)的技术于2018年首次引入刑事调查,此后被美国执法部门用于帮助识别数百名罪犯和身份不明的人类遗骸。随着IGG专业知识的增长,政策制定者已经表现出对其进行监管的兴趣。为了帮助为这些工作提供信息,并在政府间免疫组治理扩大的过程中促进其一致性,我们招募了代表政府间免疫组相关专业和观点的专家,以确定政府间免疫组的做法,并将其列为政策关注的优先事项,并制定解决这些做法的政策方案。在两轮修改后的政策德尔菲中,31名参与者为政策关注确定了9个IGG实践的优先级。这些最优先的做法涉及:同意和通知;个案资格及准则;数据管理、隐私和安全;治理和问责制。与会者表达了一系列意见,有些人持强烈意见,但没有就任何一种做法达成完全共识。然而,在执法部门参与直接面向消费者的遗传家谱数据库方面,与服务条款的趋同最为强烈,大多数人反对,几乎一半的人认为这是政策关注的重中之重。与会者还对政府免疫组期间收集和产生的数据和样本的管理以及参与政府免疫组的私营实验室的治理表示强烈和一贯的关切。我们的研究证明了在一项紧迫的公共政策问题上长期与不同专家接触的可行性和价值,并为政府间小组的政策制定提供了必要的经验基础。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Investigative genetic genealogy practices warranting policy attention: Results of a modified policy Delphi.

A technique known as investigative genetic genealogy (IGG) was first introduced to criminal investigations in 2018, and it has since been used by U.S. law enforcement to help identify hundreds of criminal perpetrators and unidentified human remains. As expertise in IGG grows, policymakers have shown interest in regulating it. To help inform these efforts and to promote coherence in IGG governance as it expands, we recruited experts representing a spectrum of IGG-relevant professions and perspectives to identify and prioritize IGG practices for policy attention and to develop policy options for addressing them. In two rounds of a modified policy Delphi, 31 participants prioritized nine IGG practices for policy attention. These top priority practices relate to: consent and notification; case eligibility and criteria; data management, privacy, and security; and governance and accountability. Participants expressed a range of opinions, some strongly held, and did not reach complete consensus with respect to any of the practices. However, convergence was strongest with respect to law enforcement participation in direct-to-consumer genetic genealogy databases against terms of service, which a large majority opposed and almost half evaluated as top priority for policy attention. Participants also voiced strong and consistent concern about management of data and samples collected and generated during IGG and the governance of private laboratories involved in IGG. Our study demonstrates the feasibility and value of engaging with diverse experts over an extended period on a pressing matter of public policy and provides a needed empirical foundation for IGG policymaking.

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来源期刊
PLoS Genetics
PLoS Genetics GENETICS & HEREDITY-
自引率
2.20%
发文量
438
期刊介绍: PLOS Genetics is run by an international Editorial Board, headed by the Editors-in-Chief, Greg Barsh (HudsonAlpha Institute of Biotechnology, and Stanford University School of Medicine) and Greg Copenhaver (The University of North Carolina at Chapel Hill). Articles published in PLOS Genetics are archived in PubMed Central and cited in PubMed.
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