Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality
- PDF / 496,853 Bytes
- 10 Pages / 595.276 x 790.866 pts Page_size
- 88 Downloads / 180 Views
ORIGINAL ARTICLE
Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality Oliver Feeney 1 & Pascal Borry 2,3 & Heike Felzmann 1 & Lucia Galvagni 4 & Ari Haukkala 5 & Michele Loi 6 & Salvör Nordal 7 & Vojin Rakic 8 & Brígida Riso 9 & Sigrid Sterckx 10 & Danya Vears 3
Received: 17 July 2017 / Accepted: 9 October 2017 # The Author(s) 2017. This article is an open access publication
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. Keywords Participant-centred research . ICT . Participatory engagement . Web 2.0
This article is part of the Topical Collection on Citizen’s Health through public-private Initiatives: Public health, Market and Ethical perspectives * Oliver Feeney [email protected]
1
Centre of Bioethical Research and Analysis, National University of Ireland (Galway), Galway, Republic of Ireland
2
Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium
3
Leuven Institute for Genomics and Society, KU Leuven, Leuven, Belgium
4
Bruno Kessler Foundation, Trento, Italy
5
Department of Social Research, University of Helsinki, Helsinki, Finland
6
Institute for Biomedical Ethics and the History of Medicine and Department of Infor
Data Loading...
