公众对调查性基因组学的看法:全国焦点小组研究结果。

Q1 Arts and Humanities AJOB Empirical Bioethics Pub Date : 2024-04-08 DOI:10.1080/23294515.2024.2336904
Jacklyn Dahlquist, Jill O. Robinson, Amira Daoud, Whitney Bash-Brooks, Amy L McGuire, Christi J. Guerrini, Stephanie M. Fullerton
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引用次数: 0

摘要

背景调查遗传系谱学(IGG)是一种将犯罪现场遗留的犯罪者 DNA 或身份不明遗骸的 DNA 所形成的基因型上传到公共遗传系谱学数据库,以确定遗传亲属,并通过创建家谱确定 DNA 的来源人的技术。由于政策制定者对 IGG 的监管表现出浓厚的兴趣,因此了解公众对 IGG 的看法以确定拟议的政策是否与公众的态度一致就显得尤为重要。每个焦点小组都探讨了五个主要议题:什么时候应该使用 IGG;谁应该进行 IGG;如何征得基因数据库用户的同意;IGG 从业人员应该遵守哪些监督制度;如果数据库用户的数据涉及执法(LE)比对,是否应该通知数据库用户。然而,一些与会者对执法部门的不信任削弱了他们对 IGG 的支持态度。所有与会者都同意,如果允许 IGG,数据库必须通知用户,但对于如何允许个人数据库用户选择退出或是否在其数据涉及特定调查时通知他们,他们没有达成一致意见。所有参与者都认为,IGG 应当受到某些规范性准则、法规或问责机制的约束。我们的研究为政策制定者、基因组数据库管理者、执法部门以及 IGG 实践中的其他利益相关者提供了有益的启示,并为今后的研究提出了多个方向。
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Public Perspectives on Investigative Genetic Genealogy: Findings from a National Focus Group Study.
BACKGROUND Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic relatives and, through the creation of a family tree, the individual who was the source of the DNA. As policymakers demonstrate interest in regulating IGG, it is important to understand public perspectives on IGG to determine whether proposed policies are aligned with public attitudes. METHODS We conducted eight focus groups with members of the public (N = 72), sampled from four geographically diverse US regions, to explore general attitudes and perspectives regarding aspects of IGG practices, applications, and policies. Five major topics were explored in each focus group: when IGG should be used; who should perform IGG; how to approach consent for genetic database users; what systems of oversight should govern IGG practitioners; and whether to notify database users if their data are involved in law enforcement (LE) matching. RESULTS Participants were supportive of IGG in most scenarios, especially for cold and violent cases. The favorable attitudes toward IGG were, however, tempered by distrust of law enforcement among some participants. All participants agreed that databases must inform users if IGG is allowed, but they did not agree on how individual database users should be allowed to opt out or whether to notify them if their data are involved in specific investigations. All participants agreed that IGG should be subject to some prescriptive guidelines, regulations, or accountability mechanisms. CONCLUSIONS These findings suggest broad public support for IGG, and interest in developing systems of accountability for its practice. Our study provides useful insight for policy makers, genomic database stewards, law enforcement, and other stakeholders in IGG's practice, and suggests multiple directions for future research.
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来源期刊
AJOB Empirical Bioethics
AJOB Empirical Bioethics Arts and Humanities-Philosophy
CiteScore
3.90
自引率
0.00%
发文量
21
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