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

描述(由申请人提供)：在大规模暴力和大规模灾难之后，法医DNA分析越来越成为寻找失踪人员的标准工具。然而，几乎没有系统性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必须为身份查验过程制定自己的特别规则和道德原则。该项目旨在查明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。第一个是确定科学家和失踪者亲属在多大程度上对DNA鉴定过程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，错误的亲子关系)；营利性生物技术公司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的程度；以及与在摆脱冲突或灾难后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等问题。第三组AIMS旨在阐明为什么DNA鉴定在某些情况下(例如波斯尼亚和9/11事件后的纽约市)被热情使用，在其他情况下(例如路易斯安那州卡特里娜飓风后)不情愿地使用，而在其他情况下完全不使用或在极其有限的情况下使用(例如卢旺达)。它还审查了参与冲突后和灾后DNA鉴定的组织的不断扩大的任务授权。该项目将从一个讲习班开始，来自世界各地的冲突后和灾后DNA鉴定利益攸关方将在讲习班上讨论他们在日常工作中面临的道德和政策挑战。这次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。在该项目的第二阶段，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事件后的纽约市、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找回和确认越南战争失踪士兵的努力。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，突出与冲突后和灾后DNA鉴定有关的主要伦理挑战，并提供最佳做法、示范政策和分析工具的例子，以便在鉴定过程的所有阶段思考两难问题。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，并为非专业读者出版一本名为《证人之声》的丛书。 与公共卫生相关：在世界各地的冲突后和灾后环境中，愤怒、绝望和敌意的一个主要原因是亲人失踪无踪的家庭和社区感到不确定和缺乏关爱。对失踪者进行DNA鉴定有可能改善这些情况，但这项技术的使用充满了伦理困境和政策挑战，可能会严重限制其潜在好处。这项研究将确定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。

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.