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）：法医DNA分析越来越多地成为在大规模暴力和大规模灾难之后寻找失踪人员的标准工具。 然而，几乎没有系统的努力来识别和分析与这种新的遗传技术使用相关的主要道德和政策挑战。 因此，参与冲突后和灾后调查的利益相关者不得不为身份证明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识别相关的道德和政策挑战。 有三组特定目标。 首先是确定失踪的科学家和亲戚在多大程度上具有对DNA识别过程能力和局限性的共同理解。 第二个涉及与使用DNA识别相关的伦理问题，包括：如何处理偶然发现（例如，未属于父子属性）；营利性生物技术公司在多大程度上对签有服务的受害者和人权组织具有独特的道德义务；以及隐私，匿名，信任，数据所有权，知情同意以及与在冲突或灾难中产生的大型遗传数据库相关的非法使用的问题。 第三组目标旨在阐明为什么在某些情况下（例如波斯尼亚和9/11纽约市）热情地使用了DNA识别，而不愿意在其他情况下（例如，赫鲁里卡后的卡特里娜路易斯安那州路易斯安那州），并且根本不是在其他情况下，在其他情况下，在其他情况下（例如，在其他情况下）（例如，兰斯达）。 它还研究了冲突后和污水播放后DNA识别的组织的扩大授权。 该项目将从一个研讨会开始，在该研讨会上，来自世界各地的冲突后和灾后DNA识别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，并将指导其后续研究。 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. 这一阶段还将研究美国军方从越南战争中恢复和确定失踪士兵的努力。 除了写作案例研究和比较分析外，研究团队还与生物伦理学咨询委员会合作，还将生产一份白皮书，强​​调与污染后DNA和污点后DNA识别相关的主要道德挑战，并提供了通过识别各种阶段的识别工具来识别各种阶段的识别工具的示例。 最后，研究团队将在书籍系列中为家庭和社区观点发表一系列口述历史，其中记录了关于失踪人员的观点，该系列的外行读者名为《 Voice of Seless》。 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，绝望和敌意的主要原因是家庭和社区的不确定性和缺乏封闭感，他们的亲人失踪而没有痕迹。 DNA识别缺失有可能改善这些情况，但是对技术的使用充满了道德困境和政策挑战，这些挑战可能会严重限制其潜在利益。 这项研究将确定和分析这些问题和挑战，并为相关利益相关者提供具体政策建议的发展。