IGG on the Internet: Characterizing Public Perspectives on Law Enforcement Use of Genetic Genealogy Data in Social Media

互联网上的 IGG：描述公众对社交媒体中基因谱系数据执法使用的看法

• 批准号: 10594243
• 负责人: Christi Guerrini
• 金额: $ 17.06万
• 依托单位: BAYLOR COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-16 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10594243
• 关键词: Attitude; Bioethics; Clinical; Clinical Research; Complement; Complex; Crime; DNA; DNA Databases; Data; Data Analyses; Data Set; Databases; Deltastab; Development; Emotions; Ensure; Ethics; Event; Facebook; Family; Focus Groups; Forcible intercourse; Forensic Medicine; Foundations; Future; Genealogical Tree; Genealogy; General Population; Genetic; Genetic Databases; Genetic Privacy; Geography; Goals; Government; Individual; Intention; Internet; Intervention; Interview; Investigation; Law Enforcement; Learning; Manuals; Measures; Methods; Murder; Outcome; Participant; Pattern; Police; Policies; Privacy; Private Practice; Procedures; Protocols documentation; Public Opinion; Public Participation; Public Policy; Publications; Published Comment; Publishing; Reporting; Research; Research Personnel; Resolution; Resources; Sampling; Scientist; Social Environment; Social Sciences; Source; Surveys; Techniques; Technology; Time; Twitter; United States; Violence; Work; base; clinical care; ethical legal social implication; evidence base; experimental study; genetic information; genetic technology; genomic data; informatics tool; innovation; insight; interest; member; news; offender; parent grant; preference; public trust; repository; response; social; social media; symposium; trend; web platform; web site

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. The proposed supplement work to collect and analyze social media coverage of IGG will support bioethical research to inform evidence-based future policy directions.

项目总结 自2018年4月逮捕被指控的金州杀手以来，调查遗传系谱(IGG)帮助 在美国结束了至少59起其他案件，但有人担心这种新技术违反了 遗传家谱数据库参与者及其家庭的隐私利益。一些人认为这些 隐私问题如此引人注目，以至于IGG威胁要破坏公众对临床和研究的参与 基因数据库，特别是那些由政府维护的数据库。过去的研究表明， 尽管个人关心基因隐私，但他们愿意与某些人分享他们的基因数据 用于特定目的的个人和实体。但所有这些研究都早于IGG，没有一项研究是针对IGG的 执法部门参与遗传家谱或其他娱乐性遗传数据库。2018年5月，我们 进行了一项至今仍是唯一一项公开发表的调查，以评估公众对IGG的意见，并发现了强有力的支持 当目的是识别暴力罪犯的时候。然而，由于资源的限制，这项调查没有 旨在说明公众在评估价值和可接受性时所做的复杂权衡 任何使用基因数据的行为。这项研究的目的是衡量公众对警察的偏好 参与遗传家谱数据库，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、基因谱系公司和基因公司进行定性访谈 系谱学家获得IGG实践和程序的技术上的准确和全面的描述 以及对其未来的预测。在目标2中，我们将进行地理上不同的焦点小组，以确定哪些是 公众认为是执法部门参与遗传家谱数据库最显著的特征 并进行一项离散选择实验，根据这些属性衡量公众的偏好。在AIM 3，我们将与专家利益相关者一起进行修改后的政策德尔福，最终得出最佳建议 IGG将偏好调查结果付诸实施的做法。这项提议是创新的，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，以 为以前未预料到的基因数据使用提供解决方案，这正在改变合作的意义 在警方调查中。这项研究将通过促进公众对分享的信心而产生积极影响 基因数据，以最大化其个人和社会效用，包括在临床护理和研究中。建议数 收集和分析社交媒体对IGG的报道的补充工作将支持生物伦理研究 以证据为基础的未来政策方向。