Salvör Nordal

Managing Access to Biobanks: How Can We Reconcile Individual Privacy and Public Interests in Genetic Research?

This article is concerned with the ultimate objectives of genetic biobanks set up to promote the public interest—being the sharing of samples and data for medical research—and the consequences for personal privacy of realising them. Our aim is to chart the values, interests and principles in play, to consider the challenges of realizing biobanking objectives on a global scale, and to propose viable ways forward that ensure, as far as possible, that access provisions remain fit for purpose throughout the entire life of a biobank, while adequately protecting the privacy interests at stake. It is argued that key features in any robust access model must include mechanisms to (a) maintain participant trust in management of the resource and to measure and respond to participants’ expectations, (b) facilitate and promote the sharing of benefits, and (c) respond timeously and effectively to new challenges.

Public views on gene editing and its uses

This paper reports on an online contrastive vignette study investigating the publics views of gene editing for therapy and enhancement in adult and prenatal contexts. The study, comprising quota samples of 1000 respondents per country, involved 10 European countries and the United States. Vignettes featuring gene editing for therapy compared to enhancement are seen as more morally acceptable and gain more support. Adult therapy attracts majority support, while prenatal enhancement elicits almost complete rejection. The assessment of adult enhancement and prenatal therapy are more ambivalent. These results and the respondents’ accounts of the reasons behind the decision point to a focus on the uses of gene editing, rather than the technology itself. The study is a contribution to understanding the practical dimensions of the ethical question: how can gene editing contribute to human flourishing?

Bottom up ethics - neuroenhancement in education and employment

Neuroenhancement involves the use of neurotechnologies to improve cognitive, affective or behavioural functioning, where these are not judged to be clinically impaired. Questions about enhancement have become one of the key topics of neuroethics over the past decade. The current study draws on in-depth public engagement activities in ten European countries giving a bottom-up perspective on the ethics and desirability of enhancement. This informed the design of an online contrastive vignette experiment that was administered to representative samples of 1000 respondents in the ten countries and the United States. The experiment investigated how the gender of the protagonist, his or her level of performance, the efficacy of the enhancer and the mode of enhancement affected support for neuroenhancement in both educational and employment contexts. Of these, higher efficacy and lower performance were found to increase willingness to support enhancement. A series of commonly articulated claims about the individual and societal dimensions of neuroenhancement were derived from the public engagement activities. Underlying these claims, multivariate analysis identified two social values. The Societal/Protective highlights counter normative consequences and opposes the use enhancers. The Individual/Proactionary highlights opportunities and supports use. For most respondents these values are not mutually exclusive. This suggests that for many neuroenhancement is viewed simultaneously as a source of both promise and concern.

Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality

The introduction of Web 2.0 technology, along with a population increasingly proficient in Information and Communications Technology (ICT), coupled with the rapid advancements in genetic testing methods, has seen an increase in the presence of participant-centred research initiatives. Such initiatives, aided by the centrality of ICT interconnections, and the ethos they propound seem to further embody the ideal of increasing the participatory nature of research, beyond what might be possible in non-ICT contexts alone. However, the majority of such research seems to actualise a much narrower definition of ‘participation’—where it is merely the case that such research initiatives have increased contact with participants through ICT but are otherwise non-participatory in any important normative sense. Furthermore, the rhetoric of participant-centred initiatives tends to inflate this minimalist form of participation into something that it is not, i.e. something genuinely participatory, with greater connections with both the ICT-facilitated political contexts and the largely non-ICT participatory initiatives that have expanded in contemporary health and research contexts. In this paper, we highlight that genuine (ICT-based) ‘participation’ should enable a reasonable minimum threshold of participatory engagement through, at least, three central participatory elements: educative, sense of being involved and degree of control. While we agree with criticisms that, at present, genuine participation seems more rhetoric than reality, we believe that there is clear potential for a greater ICT-facilitated participatory engagement on all three participatory elements. We outline some practical steps such initiatives could take to further develop these elements and thereby their level of ICT-facilitated participatory engagement.