Opin vísindi

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

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dc.contributor Háskóli Íslands
dc.contributor University of Iceland
dc.contributor.author Feeney, Oliver
dc.contributor.author Borry, Pascal
dc.contributor.author Felzmann, Heike
dc.contributor.author Galvagni, Lucia
dc.contributor.author Haukkala, Ari
dc.contributor.author Loi, Michele
dc.contributor.author Nordal, Salvör
dc.contributor.author Rakic, Vojin
dc.contributor.author Riso, Brigida
dc.contributor.author Sterckx, Sigrid
dc.contributor.author Vears, Danya
dc.date.accessioned 2018-04-13T13:11:19Z
dc.date.available 2018-04-13T13:11:19Z
dc.date.issued 2017-10-24
dc.identifier.citation Feeney, O., Borry, P., Felzmann, H., Galvagni, L., Haukkala, A., Loi, M., . . . Vears, D. (2018). Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality. Journal of Community Genetics, 9(2), 133-142. doi:10.1007/s12687-017-0342-4
dc.identifier.issn 1868-310X
dc.identifier.issn 1868-6001 (eISSN)
dc.identifier.uri https://hdl.handle.net/20.500.11815/682
dc.description.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.
dc.description.sponsorship This study was funded by COST (grant number = COST Action IS1303); Brigida Riso is supported by FCT-the Portuguese Foundation for Science and Technology under the PhD grant SFRH/BD/100779/2014.
dc.format.extent 133-142
dc.language.iso en
dc.publisher Springer Nature
dc.relation.ispartofseries Journal of Community Genetics;9(2)
dc.rights info:eu-repo/semantics/openAccess
dc.subject Participant-centred research
dc.subject ICT
dc.subject Participatory engagement
dc.subject Web 2.0
dc.subject Upplýsingatækni
dc.subject Veraldarvefurinn
dc.subject Heilsufar
dc.subject Sjúklingar
dc.subject Samvinna
dc.title Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality
dc.type info:eu-repo/semantics/article
dcterms.license This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
dc.description.version Peer Reviewed
dc.identifier.journal Journal of Community Genetics
dc.identifier.doi 10.1007/s12687-017-0342-4
dc.contributor.department Siðfræðistofnun (HÍ)
dc.contributor.department Centre for Ethics (UI)
dc.contributor.school Hugvísindasvið (HÍ)
dc.contributor.school School of Humanities (UI)

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