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Informed Consent in Forensic DNA Databases: Volunteering, Constructions of Risk and Identity Categorization

Published online by Cambridge University Press:  22 December 2009

Helena Machado
Affiliation:
Research Centre for the Social Sciences, University of Minho, Portugal and Centre for Social Sciences, University of Coimbra, Campus de Gualtar, 4710-057 Braga, Portugal E-mail: hmachado@ics.uminho.pt
Susana Silva
Affiliation:
Department of Hygiene and Epidemiology and Cardiovascular R&D Unit, University of Porto Medical School, Al. Prof. Hernâni Monteiro, 4200-319 Porto, Portugal E-mail: susilva@med.up.pt
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Abstract

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.

Type
Articles
Copyright
Copyright © London School of Economics and Political Science 2009

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References

Aas, K.F. (2006). ‘The body does not lie’: Identity, risk and trust in technoculture. Crime, Media, Culture, 2, 143158.CrossRefGoogle Scholar
Act 67/98 of 26 October 1998. Data Protection Act. URL (accessed October 2009): http://www.cnpd.pt/english/bin/legislation/Law6798EN.HTMGoogle Scholar
Barr, M. (2006). ‘I’m not really read up on genetics’: Biobanks and the social context of informed consent. BioSocieties, 1, 251262.CrossRefGoogle Scholar
Bennett, R. (2001). Antenatal genetic testing and the right to remain in ignorance. Theoretical Medicine and Bioethics, 22, 461471.CrossRefGoogle ScholarPubMed
Busby, H. (2006). Biobanks, bioethics and concepts of donated blood in the UK. Sociology of Health & Illness, 28, 850865.CrossRefGoogle ScholarPubMed
Camp, N.V., & Dierickx, K. (2007). National forensic DNA databases—Socio-ethical challenges and current practices in the EU. European Ethical-Legal Papers, 9.Google Scholar
Cole, S. (2007). How much justice can technology afford? The impact of DNA technology on equal criminal justice. Science and Public Policy, 34(2), 95107.CrossRefGoogle Scholar
Deliberation no. 3191/2008 of 3 December. (2008). Functioning rules for the DNA profiles database. URL (accessed October 2009): http://dre.pt/pdf2sdip/2008/12/234000000/4888148886.pdfGoogle Scholar
Ducournau, P. (2007). The viewpoint of DNA donors on the consent procedure. New Genetics and Society, 26, 105116.CrossRefGoogle Scholar
Dundes, L. (2001). Is the American public ready to embrace DNA as a crime fighting tool? A survey assessing support for DNA databases. Bulletin of Science Technology & Society, 21, 369375.CrossRefGoogle Scholar
Epstein, S. (2008). The rise of ‘recruitmentology’: Clinical research, racial knowledge, and the politics of inclusion and difference. Social Studies of Science, 38, 801832.CrossRefGoogle ScholarPubMed
Evans, R., & Plows, A. (2007). Listening without prejudice? Re-discovering the value of the disinterested citizen. Social Studies of Science, 37, 827853.CrossRefGoogle Scholar
Guillén, M., Lareu, M., Pestoni, C., Salas, A., & Carracedo, A. (2000). Ethical-legal problems of DNA databases in criminal investigation. Journal of Medical Ethics, 26, 266271.CrossRefGoogle ScholarPubMed
Haimes, E., & Williams, R. (2007). Sociology, ethics, and the priority of the particular: Learning from a case study of genetic deliberations. British Journal of Sociology, 58, 457476.CrossRefGoogle ScholarPubMed
Hauskeller, C. (2004). Genes, genomes and identity: Projections on matter. New Genetics and Society, 23, 285299.CrossRefGoogle ScholarPubMed
Have, H. (2001). Genetics and culture: The genetization thesis. Medicine, Health Care and Philosophy, 4, 295304.CrossRefGoogle Scholar
Hayden, C. (2007). Taking as giving: Bioscience, exchange, and the politics of benefit-sharing. Social Studies of Science, 37, 729758.CrossRefGoogle Scholar
Henriques, F., & Sequeiros, J. (2007). Relatório—regime jurídico da base de dados de perfis de ADN. Lisboa: Conselho Nacional de Ética para as Ciências da Vida. URL (accessed October 2009): http://www.cnecv.gov.pt/cnecv/pt/Pareceres/Google Scholar
Heyd, D. (1992). Genetics: Moral issues in the creation of people. Berkeley: University of California Press.CrossRefGoogle Scholar
Hoeyer, K. (2003). ‘Science is really needed—that's all I know’: Informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden. New Genetics and Society, 22, 229244.CrossRefGoogle ScholarPubMed
Jasanoff, S. (2005). In the democracies of DNA: Ontological uncertainty and political order in three states. New Genetics and Society, 24, 139155.CrossRefGoogle ScholarPubMed
Kahn, J. (2006). From disparity to difference: How race-specific medicines may undermine policies to address inequalities in health care. Southern California Interdisciplinary Law Journal, 15, 105130.Google Scholar
Kaye, D.H. (2006). Who needs special needs? On the constitutionality of collecting DNA and other biometric data from arrestees. Journal of Law, Medicine and Ethics, 34, 188198.CrossRefGoogle ScholarPubMed
Lentzos, F. (2006). Rationality, risk and response: A research agenda for biosecurity. BioSocieties, 1, 453464.CrossRefGoogle ScholarPubMed
Machado, H., & Silva, S. (2008a). Confiança, voluntariedade e supressão dos riscos: Expectativas, incertezas e governação das aplicações forenses de informação. In Frois, C. (Ed.), A sociedade vigilante: Ensaios sobre vigilância, privacidade e anonimato, 152–174. Lisboa: Imprensa de Ciências Sociais.Google Scholar
Machado, H., & Silva, S. (2008b). A Portuguese perspective: Commentary on the Nuffield Council on Bioethics Report, The forensic use of bioinformation: Ethical issues. BioSocieties, 3, 99101.Google Scholar
Marx, G. (2006). Soft surveillance: The growth of mandatory volunteerism in collecting personal information—‘Hey buddy can you spare a DNA?’. In Monahan, T. (Ed.), Surveillance and security: Technological politics and power in everyday life, 37–56. New York: Routledge.Google Scholar
Nisker, J., & Daar, A.S. (2006). Moral presentation of genetics-based narratives for public understanding of genetic science and its implications. Public Understanding of Science, 15, 113123.CrossRefGoogle Scholar
Nuffield Council on Bioethics (2007). The forensic use of bioinformation: Ethical issues. URL (accessed October 2009): http://www.nuffieldbioethics.org/fileLibrary/pdf/The_forensic_use_of_bioinformation_-_ethical_issues.pdfGoogle Scholar
O’Neill, O. (2002). Autonomy and trust in bioethics. Cambridge: Cambridge UP.CrossRefGoogle Scholar
Parry, B. (2008). The forensic use of bioinformation: A review of responses to the Nuffield Report. BioSocieties, 3, 217222.CrossRefGoogle Scholar
Rose, N. (2007). The politics of life itself: Biomedicine, power and subjectivity in the twenty-first century. Princeton, NJ: Princeton UP.CrossRefGoogle Scholar
Rose, N. (2008). Race, risk and medicine in the age of ‘your own personal genome’. BioSocieties, 3, 423439.CrossRefGoogle Scholar
Rose, N., & Novas, C. (2005). Biological citizenship. In Ong, A., & Collier, S. (Eds), Global assemblages: Technology, politics, and ethics as anthropological problems, 439–463. Oxford: Blackwell Publishing.Google Scholar
Rowe, G., & Frewer, L.J. (2000). Public participation methods: A framework for evaluation. Science, Technology & Human Values, 25, 329.CrossRefGoogle Scholar
Santos, B., & Gomes, C. (Eds) (2003). A reinserção social dos reclusos. Um contributo para o debate sobre a reforma do sistema prisional. Coimbra: OPJP, Centro de Estudos Sociais da Universidade de Coimbra. URL (accessed October 2009): http://opj.ces.uc.pt/portugues/relatorios/relatorio_14.htmlGoogle Scholar
Scott, A., & Du Plessis, R. (2008). Eliciting situated knowledges about new technologies. Public Understanding of Science, 17, 105119.CrossRefGoogle Scholar
Silva, S., & Machado, H. (2009). Trust, morality and altruism in the donation of biological material: The case of Portugal. New Genetics and Society, 28, 103118.CrossRefGoogle Scholar
Smart, A., Tutton, R., Martin, P., Ellison, G., & Ashcroft, R. (2008). The standardization of race and ethnicity in biomedical science editorials and UK biobanks. Social Studies of Science, 38, 407423.CrossRefGoogle ScholarPubMed
Svendsen, M., & Koch, L. (2008). Between neutrality and engagement: A case study of recruitment to pharmacogenomic research in Denmark. BioSocieties, 3, 399418.CrossRefGoogle Scholar
Williams, G., & Schroeder, D. (2004). Human genetics banking: Altruism, benefit and consent. New Genetics and Society, 23, 89103.CrossRefGoogle ScholarPubMed
Williams, R., Johnson, P., & Martin, P. (2004). Genetic information and crime investigation: Social, ethical and public policy aspects of the establishment, expansion and police use of the National DNA Database. London: Official Report.Google Scholar
Williams, R., & Johnson, P. (2004). Wonderment and dread: Representations of DNA in ethical disputes about forensic DNA databases. New Genetics and Society, 23, 205223.CrossRefGoogle ScholarPubMed