The viewpoint of DNA donors on the consent procedure

Abstract

This paper questions the participants' viewpoint in a research in genetic epidemiology on the collection procedure of their consent. Stemming from a qualitative sociological approach through ethnographic observations and interviews (n ¼ 35), it aims at understanding the actual experience of the procedure. Through collected speeches, it emphasizes the existence of contrasted appreciations of the signature procedure of the consent (from positive reactions to attitudes of mistrust). This article identifies the manner in which these appreciations are built. It suggests that the taking into account of these different appreciations and their logics may benefit a co-construction of plans for the constitution of a 'DNA bank' in population. Finally, some modalities are proposed briefly in the conclusion.

Donors Perceptions of Consent to and Feedback from Biobank Research: Time to Acknowledge Diversity?

“…A number of qualitative studies conducted in the U.S. [53], Canada [16], the UK [26,27,35,42,54,55,78,79,80], Norway [19], Sweden [30,81], Austria [29,31], and France [28] might help us understand better what this means. These studies indicate that people tend to expect an element of reciprocity when contributing to biobank research.…”

“…Studies also find that diverse groups of donors share a tendency in as far as they pay little attention to information sheets; often forget the information provided; and rarely use the offered information to make up their mind about participation [19,26,27,28,29,30]. Furthermore, these donors do not necessarily trust informed consent practices to effectually ensure their interests, and in some instances the consent form is viewed as protecting the researcher rather than the donor [28,31,32].…”

“…Furthermore, these donors do not necessarily trust informed consent practices to effectually ensure their interests, and in some instances the consent form is viewed as protecting the researcher rather than the donor [28,31,32]. …”

The Ethics of Research Biobanking: A Critical Review of the Literature

“…A French study specifically investigated how donors viewed the consent process. Interestingly, they saw the consent requirement mostly as a protection of the research institution rather than of themselves and many disliked the procedure (Ducournau, 2007). UK-based studies have found that donors have a number of worries relating to confidentiality, which indicates slightly more emphasis on privacy in the UK than in the Scandinavian countries (Levitt and Weldon, 2005;Weldon, 2007).…”

“…In particular, informed consent does not seem to serve the purpose of protecting donors (Bister et al, 2009). Donors rarely read, recall or use the information with which they are provided (Busby, 2006;Hoeyer, 2003;Ducournau, 2007). This type of problem with informed consent is well-known beyond the biobank issue (Sugarman et al, 1999).…”