THE ETHICS OF POST-CONFLICT AND POST-DISASTER DNA IDENTIFICATION

冲突后和灾后 DNA 鉴定的伦理学

• 批准号: 8550539
• 负责人: Jay David Aronson
• 金额: $ 40.45万
• 依托单位: CARNEGIE-MELLON UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-01-28 至 2015-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8550539
• 关键词: Affect; Africa; Americas; Anger; Argentina; Asia; Authorization documentation; Autopsy; Bioethics; Biotechnology; Books; Bosnia-Herzegovina; Case Study; Cataloging; Catalogs; Categories; Chile; Collaborations; Collection; Communication; Communities; Complex; Conflict (Psychology); Consent; Contracts; Country; DNA; DNA Fingerprinting; Data; Development; Disasters; Educational workshop; Emotional; Ensure; Ethical Analysis; Ethical Issues; Ethics; Ethnography; Europe; Event; Exhumation; Face; Family; Forensic Anthropology; Forensic Medicine; Forensic Sciences; Friends; Genetic; Genetic Databases; Goals; Guatemala; Hostility; Human Rights; Hurricane; Incidental Findings; Informed Consent; International; Interview; Investigation; Iraq; Journals; Justice; Laboratory Personnel; Link; Louisiana; Maintenance; Memory; Middle East; Military Personnel; Mind; Modeling; Names; New York City; Oral; Outcome; Ownership; Paper; Participant; Perception; Persons; Peru; Phase; Physicians; Policies; Politics; Privacy; Procedures; Process; Publishing; Reader; Recommendation; Recording of previous events; Recovery; Relative (related person); Reliance; Research; Research Project Grants; Rwanda; Scientist; Series; Services; Soldier; South Africa; Staging; Techniques; Technology; Testing; Thailand; Thinking; Time; Trust; Tsunami; Uncertainty; Vietnam; Violence; Voice; Work; Writing; analytical tool; comparative; design; expectation; father role; genetic technology; improved; informant; loved ones; member; news; non-genetic; psychosocial; public health relevance; reconstruction; repository; response; social; tool

DESCRIPTION (provided by applicant): Forensic DNA profiling is increasingly becoming a standard tool in the search for missing people in the aftermath of mass violence and mass disaster. Yet, there has been very little systematic effort to identify and analyze the major ethical and policy challenges associated with this new use of genetic technology. Thus, stakeholders involved in post-conflict and post-disaster investigations have had to develop their own ad hoc rules and ethical principles for the identification process. This project seeks to identify and analyze the ethical and policy challenges associated with post-conflict and post-disaster DNA identification. There are three sets of specific aims. The first is to determine the extent to which scientists and relatives of the missing share a common understanding of capacities and limitations of the DNA identification process. The second relates to ethical issues associated with the use of DNA identification, including: how to deal with incidental findings (e.g., misattributed paternity); the extent to which for-profit biotechnology companies have unique ethical obligations to victims and human rights organizations that contract their services; and issues of privacy, anonymity, trust, data ownership, informed consent, and illicit use associated with the creation of large genetic databases in countries emerging from conflict or disaster. The third set of aims seeks to elucidate why DNA identification is used enthusiastically in some cases (e.g. Bosnia and post-9/11 New York City), reluctantly in others (e.g., post-Hurricane Katrina Louisiana), and not at all, or under extremely limited circumstances, in others (e.g., Rwanda). It also examines the expanding mandates of the organizations involved in post-conflict and post-disaster DNA identification. The project will begin with a workshop in which post-conflict and post-disaster DNA identification stakeholders from around the world will discuss the ethical and policy challenges they face in their daily work. This workshop will enable the research team to determine what information will be most useful to stakeholders and will guide their subsequent research. In the second phase of the project, the research team will conduct interviews, oral histories, and ethnographic and archival research in various post-conflict and post-disaster settings, including: post-9/11 New York City, post-Katrina Louisiana, Argentina, Bosnia and Herzegovina, Chile, Guatemala, Iraq, Peru, South Africa, and post-tsunami Thailand. This phase will also examine the U.S. military's efforts to recover and identify missing soldiers from the Vietnam War. In addition to writing case studies and comparative analyses to be published in academic journals and online, the research team, in collaboration with the bioethics advisory board, will also produce a white paper that highlights the major ethical challenges associated with post-conflict and post-disaster DNA identification and provides examples of best practices, model policies, and analytical tools for thinking through dilemmas at all stages of the identification process. Finally, the research team will publish a collection of oral histories documenting the family and community perspective on missing persons in a book series for lay readers called Voice of Witness.

描述（由申请人提供）：法医DNA分析越来越成为在大规模暴力和大规模灾难后寻找失踪人员的标准工具。 然而，很少有系统的努力来确定和分析与这种新的基因技术使用相关的主要伦理和政策挑战。 因此，参与冲突后和灾后调查的利益攸关方不得不为身份查验过程制定自己的特别规则和道德原则。 该项目旨在确定和分析与冲突后和灾后DNA鉴定相关的伦理和政策挑战。 有三套具体目标。 首先是确定科学家和失踪人员亲属在多大程度上对DNA鉴定程序的能力和局限性有共同的理解。 第二个问题涉及与使用DNA鉴定有关的伦理问题，包括：如何处理偶然发现（例如，错误归因的亲子关系）;营利性生物技术公司在多大程度上对受害者和与其签订服务合同的人权组织负有独特的道德义务;以及与在刚摆脱冲突或灾难的国家建立大型基因数据库有关的隐私、匿名、信任、数据所有权、知情同意和非法使用问题。 第三组目标试图阐明为什么DNA鉴定在某些情况下（例如波斯尼亚和9/11后的纽约市）被热情地使用，而在其他情况下（例如，卡特里娜飓风后的路易斯安那州），而在其他情况下（例如，卢旺达）。 报告还审查了参与冲突后和灾后DNA鉴定工作的各组织不断扩大的任务。 该项目开始时将举办一个讲习班，来自世界各地的冲突后和灾后DNA鉴定利益攸关方将讨论他们在日常工作中面临的伦理和政策挑战。 该研讨会将使研究小组能够确定哪些信息对利益攸关方最有用，并将指导他们随后的研究。 在项目的第二阶段，研究小组将在各种冲突后和灾后环境中进行访谈、口述历史、人种学和档案研究，包括：9/11后的纽约市、卡特里娜飓风后的路易斯安那州、阿根廷、波斯尼亚和黑塞哥维那、智利、危地马拉、伊拉克、秘鲁、南非和海啸后的泰国。 这一阶段还将审查美国军方在寻找和确认越南战争失踪士兵方面的努力。 除了撰写案例研究和比较分析以在学术期刊和网络上发表外，研究小组还将与生物伦理咨询委员会合作，编写一份白色文件，强调与冲突后和灾后DNA鉴定相关的主要伦理挑战，并提供最佳做法、示范政策、和分析工具，以思考在识别过程的所有阶段的困境。 最后，研究小组将出版一本口述历史集，记录家庭和社区对失踪人员的看法，作为一本面向普通读者的系列丛书，名为《证人之声》。