In this article we aim to expand the traditional ethical issues related to the use and storage of genetic information in forensic DNA databases by exploring the Portuguese practices of informed consent in the context of DNA sample collection for forensic processing. This article focuses on three interrelated domains: the practice of volunteering to contribute to the Portuguese forensic DNA database; the portfolio of risks presented to DNA donors; and the ethical implications of requesting donors’ ethnic group among their personal data. We argue that the Portuguese forensic DNA database is an interesting case study to re-focus the ethical debate on the implications of collecting genetic information, elucidating how this activity reconfigures interpersonal relations and social hierarchy, the power of legal medicine and criminal justice, and the social construction of personal autonomy, privacy and individual rights. The practices of informed consent need to incorporate answers to risks and uncertainties posed by collecting DNA samples and DNA profiling in forensic genetic databases.
KeywordsForensic DNA Databases; Identity; Informed Consent; Risk; Portugal
Helena Machado is Associate Professor (with Habilitation) of Sociology in the Department of Sociology at the University of Minho, Portugal, and a member of the Research Centre for the Social Sciences at the same institution. She is also an associate researcher at the Centre for Social Studies at the University of Coimbra. Her research interests are primarily in the fields of DNA databases for forensic purposes, lay assessment of genetic paternity testing and the interfaces between the criminal justice system and the mass media. She is currently the director of two interdisciplinary projects about the uses of genetic information in forensic contexts, both funded by the Foundation for Science and Technology (Portuguese Ministry of Science, Technology and Higher Education).
Susana Silva (PhD in Sociology) worked as postdoctoral researcher at the Research Centre for the Social Sciences, Department of Sociology, University of Minho, before moving to the Cardiovascular Research and Development Unit, Department of Hygiene and Epidemiology, University of Porto Medical School, Portugal, where she works as a senior researcher. She has written extensively on topics related to reproductive and genetic technologies. Her research interests are primarily in the fields of interactions between expert and lay knowledge, informed consent and rhetoric related to donation of biological material.