Journal article

Genuine Participation in Participant-Centred Research Initiatives: The Rhetoric and the Potential Reality

O Feeney, P Borry, H Felzmann, L Galvagni, A Haukkala, M Loi, S Nordal, V Rakic, B Riso, S Sterckx, D Vears

Journal of Community Genetics | Springer | Published : 2018

Abstract

© 2017, The Author(s). 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 ini..

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