The Ethics of Post-Conflict and Post-Disaster DNA Identification
Institution: Carnegie Mellon University
FOA Number: PA-08-012
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.
NATIONAL HUMAN GENOME RESEARCH INSTITUTE
Jan 28, 2011
Nov 30, 2013