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: 8215655
• 负责人: Jay David Aronson
• 金额: $ 33.37万
• 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 2014-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8215655
• 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. PUBLIC HEALTH RELEVANCE: A major cause of anger, despair, and hostility in post-conflict and post-disaster settings around the world is the uncertainty and lack of closure felt by families and communities whose loved ones disappeared without a trace. DNA identification of the missing has the potential to ameliorate these situations, but use of the technology is fraught with ethical dilemmas and policy challenges that can severely limit its potential benefits. This research will identify and analyze these issues and challenges, and inform the development of concrete policy recommendations by relevant stakeholders.

描述（由申请人提供）：在大规模暴力和大规模灾难发生后，法医DNA分析正日益成为寻找失踪人员的标准工具。然而，很少有系统的努力来识别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必须为识别过程制定自己的特别规则和道德原则。该项目旨在识别和分析与冲突后和灾后DNA鉴定相关的道德和政策挑战。具体目标有三套。首先是确定科学家和失踪者亲属对DNA鉴定过程的能力和局限性的共同理解程度。第二个涉及与使用DNA鉴定相关的伦理问题，包括：如何处理偶然发现（例如，错误归属的父亲）；营利性生物技术公司在多大程度上对与其签订服务合同的受害者和人权组织负有独特的道德义务；以及在刚从冲突或灾难中恢复的国家中，与建立大型基因数据库相关的隐私、匿名、信任、数据所有权、知情同意和非法使用等问题。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，在其他情况下（例如卡特里娜飓风后的路易斯安那州）不情愿地使用，而在其他情况下（例如卢旺达）根本不使用或在极端有限的情况下使用。报告还审查了参与冲突后和灾后DNA鉴定的组织不断扩大的任务。该项目将以一个研讨会开始，来自世界各地的冲突后和灾后DNA鉴定利益相关者将在研讨会上讨论他们在日常工作中面临的道德和政策挑战。该研讨会将使研究小组能够确定哪些信息对利益相关者最有用，并将指导他们随后的研究。在项目的第二阶段，研究小组将在冲突后和灾难后的不同环境中进行访谈、口述历史、民族志和档案研究，包括：9/11后的纽约市、卡特里娜后的路易斯安那州、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越南战争中寻找和识别失踪士兵的努力。除了撰写将在学术期刊和网上发表的案例研究和比较分析外，研究小组还将与生物伦理咨询委员会合作，编写一份白皮书，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的示例，以便在鉴定过程的所有阶段思考困境。最后，研究小组将出版一本口述历史汇编，记录家庭和社区对失踪人口的看法，并将其收录在名为“见证之声”的系列丛书中，供外行读者阅读。