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

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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.

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Notes

  1. 1 In all four consent forms, the donor must declare that he or she authorizes his or her photograph to be taken during the collection of samples.

  2. 2 The Act on the Protection of Personal Data (Act 67/98 of 26 October) transposed into the Portuguese legislation the European norms on the protection of people with regard to the processing of personal data and on the free movement of such data.

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Acknowledgements

We would like to thank the Foundation for Science and Technology (Portuguese Ministry of Science, Technology and Higher Education) for financing this research through a post-doc fellowship SFRH/BPD/34143/2006 (2007–10) and the project ‘Forensic DNA databasing in Portugal: contemporary issues in ethics, practices and policy’ (PTDC/CS-ECS/098148/2008).

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Machado, H., Silva, S. Informed Consent in Forensic DNA Databases: Volunteering, Constructions of Risk and Identity Categorization. BioSocieties 4, 335–348 (2009). https://doi.org/10.1017/S1745855209990329

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