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

项目摘要 自2018年4月涉嫌金州杀手被捕以来，调查遗传谱系（IGG） 关闭至少59个其他案件在美国，但有人担心，这种新技术违反了 遗传系谱数据库参与者及其家人的隐私利益。有人认为，这些 隐私问题是如此引人注目，以至于IGG威胁要破坏公众参与临床和研究 基因数据库，特别是政府维护的基因数据库。过去的研究表明， 虽然个人对基因隐私感到担忧，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， 执法部门参与遗传系谱或其他娱乐性遗传数据库。2018年5月，我们 进行了迄今为止唯一一次公开发表的调查，以评估公众对IGG的看法，并得到了强烈的支持 当目的是识别暴力罪犯时。然而，由于资源限制，调查没有 旨在解释公众在评估价值和可接受性时所做的复杂权衡 基因数据的任何用途。本研究的目的是测量公众对警察的偏好 参与遗传谱系数据库，为私人做法和公共政策提供信息。在目标1中，我们 对执法部门、法医科学家、遗传宗谱公司和遗传学家进行定性访谈。 系谱学家获得技术上精确和全面的描述IGG的做法和程序 和对未来的预测。在目标2中，我们将组织不同地域的焦点小组， 公众认为是执法部门参与遗传谱系数据库的最突出的属性 并进行一个离散选择实验，根据这些属性来衡量公众的偏好。在Aim中 3、我们将与利益相关者专家一起进行修改政策德尔菲，最终推荐最佳方案 IGG的实践，使偏好结果可操作化。这是一项创新，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分析， 对以前未预料到的基因数据使用的知情解决方案正在改变合作的意义， 在警方的调查中。该研究将通过促进公众对共享的信心产生积极影响 遗传数据以最大限度地提高其个人和社会效用，包括在临床护理和研究中。

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.