Incidental findings in the use of DNA to identify human remains: An ethical assessment |
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| Institution: | 1. Center for Bioethics and Health Law, University of Pittsburgh, 3708 Fifth Avenue – Suite 300, Pittsburgh, PA 15213, United States;2. Center for Ethics and Policy, Department of Philosophy, Carnegie Mellon University, 5000 Forbes Avenue, Pittsburgh, PA 15213, United States;3. Center for Human Rights Science, Department of History, Carnegie Mellon University, 5000 Forbes Avenue, Pittsburgh, PA 15213, United States;1. LABANOF (Laboratorio di Antropologia e Odontologia Forense), Dipartimento di Scienze Biomediche per la Salute, Sezione di Medicina Legale, Università degli Studi di Milano, Milan, Italy;2. Fondazione Isacchi Samaja ONLUS, Milan, Italy;3. Dipartimento di Sanità Pubblica, Medicina Sperimentale e Forense, Unità di Medicina Legale e Scienze Forensi, Università di Pavia, Pavia, Italy;4. Dipartimento di Ricerca Traslazionale e Nuove Tecnologie in Medicina e Chirurgia, Università di Pisa, Pisa, Italy;5. Laboratorio di Genetica Forense, Gabinetto Regionale Polizia Scientifica di Palermo;6. Ufficio del Commissario Straordinario per le Persone Scomparse, Roma, Italy;1. Mahidol University International College, Thailand;2. Yantai University;1. Department of Pathology and Forensic Medicine, University Hospital Centre Split, 21 000 Split, Croatia;2. Department Forensic Medicine, University of Split School of Medicine, 21 000 Split, Croatia;3. General Hospital Dubrovnik, Department of Pathology, Dubrovnik, Croatia;4. University of Split, University Department for Forensic Sciences, 21 000 Split, Croatia;5. University of Split, School of Medicine Split, Split, Croatia;1. Instituto de Pesquisa de DNA Forense, Polícia Civil do Distrito Federal, Brasília, Brazil;2. Secretaria Nacional de Segurança Pública do Ministério da Justiça, SENASP/MJ, Brasília, Brazil;3. Instituto de Medicina Legal, Polícia Civil do Distrito Federal, Brasília, Brazil;1. Instituto de Pesquisa de DNA Forense, Polícia Civil do Distrito Federal, Brasília, Brazil;2. Secretaria Nacional de Segurança Pública, Ministério da Justiça, Brasília, Brazil;3. Instituto de Pesquisa e Perícias em Genética Forense, Polícia Civil do Estado do Rio de Janeiro, Rio de Janeiro, Brazil;4. Instituto de Medicina Legal, Polícia Civil do Distrito Federal, Brasília, Brazil |
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| Abstract: | DNA analysis is increasingly used to identify the remains of victims of conflicts and disasters. This is especially true in cases where remains are badly damaged and fragmented, or where antemortem records are unavailable. Incidental findings (IFs)—that is, genetics-related information for which investigators were not looking—may result from these identification efforts employing DNA analysis. Because of the critical role played by family members of the missing in identification efforts, as well as the familial nature of DNA, identification initiatives employing DNA analysis are particularly prone to reveal IFs about familial relationships, such as misattributed paternity or false beliefs about sibling relationships. Despite forensic scientists’ widespread awareness of the possibility of generating IFs, to date there has been relatively little explicit guidance about their management. This paper fills that gap. It offers substantive guidance about the ethical management of IFs in this context. To ensure that the analysis addresses actual needs and practices in the field, one author (JDA) conducted semi-structured interviews with key informants from six regionally diverse organizations involved in post-conflict or post-disaster identification efforts. The paper first describes how methods of DNA analysis give rise to IFs. Next, it explains the importance of developing an ethically justified general policy for managing IFs and discusses features of DNA identification efforts that are relevant to such a policy. Then it presents an argument in support of a general policy of nondisclosure—specifically, that considerations of fair access to the individual and social benefits of identification efforts, and the concern to minimize and fairly distribute the risks of participation, support a policy of nondisclosure. It concludes by considering some implications of this argument for the choice among scientific practices involved in using DNA analysis to identify human remains, as well as for managing non-genetic incidental findings. |
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