Abstract
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.
Highlights
It has been argued that too many deliberations and decisions in health and genetic research contexts have focused predominantly on the perspectives of medical research professionals and seldom on the perspectives of the patient or research participant
Information and Communications Technology (ICT) may become a useful tool for reviving the democratic ideal of participatory engagement in fields such as health-related research through its potential to facilitate the reconstruction of hierarchal relationships to be more egalitarian
On the face of it, this trend seems to be reflected in participant-centred research (PCR) initiatives that are considered by some to place patients and research participants— through use of ICT—increasingly at the centre of decision-making
Summary
It has been argued that too many deliberations and decisions in health and genetic research contexts have focused predominantly on the perspectives of medical research professionals and seldom on the perspectives of the patient or research participant. More than increasing participation in a numerical sense, the deliberative approach argues against a view of democracy that merely involves the aggregation of pre-existing and fixed preferences Instead, they ascribe to an ideal where political decision-making involves free and equal citizens that listen to and respect each other, reasonably reflect on issues, give good reasons for their positions, seek to understand the perspectives of others and are willing to change their initial preferences during the process of deliberation (Burgess et al 2008: 285). It can be understood as exemplifying an overall ideal of seeking to increase the ‘quantity of quality’ opportunities for citizens (i.e. patients or research participants) to be better involved within and to contribute to decision-making processes that affect their lives.7 Insofar as this is the case, the aforementioned forms of participatory initiatives would be examples of, what we call, genuine participatory engagement that can be increasingly seen in a nonICT context. A recent study further highlights that such rhetoric ‘seems to have been endorsed by much of the mainstream genomics research community as a compatible extension of its own efforts’ (McGowan et al 2017)
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