After the Golden State Killer: Public Preferences and Policy Implications of Police Use of Genetic Data (The ForenSeq Study)

项目概要 自 2018 年 4 月涉嫌金州杀手被捕以来，基因谱系调查 (IGG) 已帮助 美国已结案至少 59 起案件，但有人担心这种新技术违反了 遗传谱系数据库参与者及其家人的隐私利益。有些人认为，这些 隐私问题如此引人注目，以至于 IGG 可能会破坏公众对临床和研究的参与 遗传数据库，特别是那些由政府维护的数据库。过去的研究表明 尽管个人担心基因隐私，但他们愿意与某些人分享他们的基因数据 出于特定目的的个人和实体。但所有这些研究都早于 IGG 进行，并且没有进行任何探讨 执法部门参与遗传谱系或其他娱乐遗传数据库。 2018年5月，我们 进行了迄今为止唯一公开的调查来评估 IGG 的公众舆论并获得了强有力的支持 当目的是识别暴力犯罪分子时。但由于资源限制，此次调查未能进行 旨在考虑公众在评估价值和可接受性时做出的复杂权衡 对遗传数据的任何使用。本研究的目的是衡量公众对警察的偏好 参与遗传谱系数据库，为私人实践和公共政策提供信息。在目标 1 中，我们将 对执法部门、法医科学家、遗传家谱公司和遗传家谱进行定性访谈 系谱学家获得 IGG 实践和程序的技术上精确且全面的描述 以及对其未来的预测。在目标 2 中，我们将组织不同地域的焦点小组，以确定 公众认为是执法参与遗传谱系数据库的最显着特征 并进行离散选择实验，根据这些属性来衡量公众的偏好。瞄准 3、我们将与专家利益相关者一起修改德尔福政策，最终推荐最佳 IGG 将偏好调查结果付诸实践的做法。该提案具有创新性，因为它将 使用多种定性、定量和实验方法对收集的见解和数据进行三角测量， 为之前未曾预料到的基因数据使用提供解决方案，这正在改变合作的含义 在警方的调查中。该研究将通过增强公众分享的信心来产生积极影响 遗传数据最大化其个人和社会效用，包括临床护理和研究。

PROJECT SUMMARY Since the arrest of the alleged Golden State Killer in April 2018, investigative genetic genealogy (IGG) has helped close at least 59 other cases in the United States, yet there are concerns that this new technique violates the privacy interests of participants in genetic genealogy databases and their families. Some believe that these privacy concerns are so compelling that IGG threatens to undermine public participation in clinical and research genetic databases, especially those maintained by the government. Past studies have demonstrated that although individuals are concerned about genetic privacy, they are willing to share their genetic data with certain individuals and entities for particular purposes. But all of these studies pre-date IGG and none probed participation of law enforcement in genetic genealogy or other recreational genetic databases. In May 2018, we conducted what remains the only published survey to assess public opinion of IGG and found strong support when the purpose is to identify violent criminals. Due to resource constraints, however, the survey was not designed to account for the complex trade-offs that the public makes when assessing the value and acceptability of any use of genetic data. The objective of this research is to measure public preferences regarding police participation in genetic genealogy databases to inform private practices and public policy. In Aim 1, we will conduct qualitative interviews of law enforcement, forensic scientists, genetic genealogy firms, and genetic genealogists to obtain a technically precise and comprehensive description of IGG practices and procedures and forecasts of its future. In Aim 2, we will conduct geographically diverse focus groups to identify what the public believes are the most salient attributes of law enforcement participation in genetic genealogy databases and conduct a discrete choice experiment that will measure public preferences based on these attributes. In Aim 3, we will conduct a modified policy Delphi with expert stakeholders that culminates in recommended best practices for IGG that operationalize the preference findings. This proposal is innovative because it will triangulate insights and data collected using multiple qualitative, quantitative, and experimental methods to inform solutions to a previously unanticipated use of genetic data that is transforming what it means to cooperate in police investigations. The research will have a positive impact by promoting public confidence in sharing genetic data to maximize their individual and social utility, including in clinical care and research.