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

冲突后和灾后 DNA 鉴定的伦理学

基本信息

批准号：
8039649
负责人：
Jay David Aronson
金额：
$ 41.62万
依托单位：
CARNEGIE-MELLON UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2011
资助国家：
美国
起止时间：
2011-01-28 至 2013-11-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8039649
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 reconstruction repository response social tool

项目摘要

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）：法医 DNA 分析日益成为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，很少有系统性的努力来识别和分析与基因技术新用途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临时规则和道德原则。该项目旨在识别和分析与冲突后和灾后 DNA 识别相关的伦理和政策挑战。共有三组具体目标。首先是确定科学家和失踪人员亲属对 DNA 识别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，错误的亲子鉴定）；营利性生物技术公司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的程度；以及与在刚刚摆脱冲突或灾难的国家创建大型遗传数据库相关的隐私、匿名、信任、数据所有权、知情同意和非法使用问题。第三组目标旨在阐明为什么 DNA 鉴定在某些情况下被热烈使用（例如波斯尼亚和 9/11 后的纽约市），而在另一些情况下则不情愿地使用（例如路易斯安那州卡特里娜飓风后），或者根本没有使用，或者在其他国家（例如卢旺达），情况极为有限。它还审查了参与冲突后和灾后 DNA 鉴定的组织不断扩大的职责。该项目将以研讨会开始，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。该研讨会将使研究团队能够确定哪些信息对利益相关者最有用，并指导他们的后续研究。在项目的第二阶段，研究团队将在各种冲突后和灾后环境中进行访谈、口述历史以及人种学和档案研究，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寻找和识别越南战争失踪士兵的努力。除了撰写在学术期刊和网络上发表的案例研究和比较分析外，研究团队还将与生物伦理学咨询委员会合作编写一份白皮书，强调与冲突后和后冲突相关的主要伦理挑战。灾难 DNA 识别，并提供最佳实践、模型政策和分析工具的示例，用于思考识别过程各个阶段的困境。最后，研究小组将出版一系列口述历史，记录家庭和社区对失踪人员的看法，供非专业读者阅读，名为“证人之声”。公共卫生相关性：在世界各地的冲突后和灾后环境中，造成愤怒、绝望和敌意的一个主要原因是，亲人失踪得无影无踪的家庭和社区感到不确定和缺乏封闭感。对失踪人员进行 DNA 识别有可能改善这些情况，但该技术的使用充满了道德困境和政策挑战，可能会严重限制其潜在好处。这项研究将识别和分析这些问题和挑战，并为相关利益攸关方制定具体的政策建议提供信息。