Guerrini Christi J, Kalokairinou Louiza, Robinson Jill O, Bash Brooks Whitney, Fullerton Stephanie M, Huston Sara, Dahlquist Jacklyn, Madden Diana, Crossnohere Norah, Campoamor Nicola, Bridges John F P, McGuire Amy L
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, United States of America.
Department of Bioethics and Humanities, University of Washington School of Medicine, Seattle, Washington, United States of America.
PLoS Genet. 2025 Jan 16;21(1):e1011520. doi: 10.1371/journal.pgen.1011520. eCollection 2025 Jan.
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.
一种名为调查性遗传系谱学（IGG）的技术于2018年首次被引入刑事调查，此后美国执法部门一直使用它来帮助识别数百名犯罪者和身份不明的遗体。随着IGG专业知识的增长，政策制定者对其进行监管表现出兴趣。为了为这些努力提供信息，并在IGG扩展时促进其治理的一致性，我们招募了代表一系列与IGG相关职业和观点的专家，以确定IGG实践并将其按优先顺序排列，以供政策关注，并制定应对这些实践的政策选项。在两轮改进后的政策德尔菲法中，31名参与者将九项IGG实践列为政策关注的优先事项。这些最优先的实践涉及：同意和通知；案件资格和标准；数据管理、隐私和安全；以及治理和问责制。参与者表达了一系列观点，有些观点非常坚定，并且对于任何一项实践都没有达成完全共识。然而，在执法部门违反服务条款参与直接面向消费者的遗传系谱数据库方面，意见最为一致，绝大多数人反对这一做法，近一半的人将其列为政策关注的首要事项。参与者还对IGG过程中收集和生成的数据及样本的管理，以及参与IGG的私人实验室的治理表达了强烈且一致的担忧。我们的研究证明了就一个紧迫的公共政策问题与不同专家进行长期接触的可行性和价值，并为IGG政策制定提供了必要的实证基础。
