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

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. , 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.

Ethical Controversies of Familial Searching: The Views of Stakeholders in the United Kingdom and in Poland

“…In the case of missing persons, DNA samples are generally voluntarily provided by families to facilitate the search and identification of their missing relatives. There are, therefore, two kinds of different issues related to consent at stake (Holm 2015;Machado and Silva 2009). Firstly, there is an issue from the side of relatives providing their own DNA samples.…”

Forensic DNA phenotyping: Developing a model privacy impact assessment

“…These loci were, at the time, thought not to be informative, or to consist of 'junk DNA', and are used exclusively for identity, not phenotype prediction (with the exception of the amelogenin sex-determining locus) [21]. The notion that these loci are not informative for phenotypes has been challenged both in terms of functional genomics and in the context of the broader privacy debate over law enforcement use of DNA [12,22,23].…”

“…Given that Forensic DNA Phenotyping requires more intrusive analysis, if a court were to consider consent from a privacy perspective, it may well be construed narrowly. This is similar to diagnostic medicine, where any ambiguity in patient consent would likely be interpreted as extending only to analysis reasonably necessary to provide effective diagnosis and treatment [23].…”

Voluntary Participation in Forensic DNA Databases

“…The legislation outlines the possibilities for gradually developing the DNA database by collecting samples from volunteers, either the relatives of missing persons or unidentified victims or anyone individual willing to donate a sample (Article 6[1] of Law 5/2008). In the context of this legislation, a volunteer is an active noncriminal who agrees to give a sample on his or her own initiative, without being approached by an agent of the justice system (Machado and Silva 2009). Samples are collected from volunteers on a basis of free and informed consent, following a sample collection request submitted in writing that must be addressed by the volunteer to the competent authority for DNA laboratory analysis-the Laboratory of the Scientific Police and the National Institute of Forensic Medicine (Article 6[2] of Law 5/2008).…”

“…A request by a volunteer for their DNA profile to be included in the database may symbolically signify maximization of choice and a sense of individual responsibility toward maintaining social order. In addition, the genetic profile of the volunteer is received by the state as a voluntary gift and as the citizen's contribution toward expanding a database designed to fight crime and ensure public peace and security (Machado and Silva 2009). However, how do citizens engage with the social values embedded in the idea of volunteering to be included in the national forensic DNA database?…”