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Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting

OBJECTIVE: As genomic research gathers momentum in sub-Saharan Africa, it has become increasingly important to understand the reasons why individuals wish to participate in this kind of medical research. Against the background of communitarianism conceived as typical of African communities, it is of...

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Autores principales: Ogunrin, Olubunmi, Woolfall, Kerry, Gabbay, Mark, Frith, Lucy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5886479/
https://www.ncbi.nlm.nih.gov/pubmed/29621313
http://dx.doi.org/10.1371/journal.pone.0195171
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author Ogunrin, Olubunmi
Woolfall, Kerry
Gabbay, Mark
Frith, Lucy
author_facet Ogunrin, Olubunmi
Woolfall, Kerry
Gabbay, Mark
Frith, Lucy
author_sort Ogunrin, Olubunmi
collection PubMed
description OBJECTIVE: As genomic research gathers momentum in sub-Saharan Africa, it has become increasingly important to understand the reasons why individuals wish to participate in this kind of medical research. Against the background of communitarianism conceived as typical of African communities, it is often suggested that individuals consent to participate on the grounds of solidarity and to further the common good. In this paper, we seek to explore this contention by presenting data from focus groups with potential research participants about what would influence their decisions to participate in genomic research. METHODS AND RESULTS: These focus groups were conducted as part of a larger qualitative study with a purposively selected group of participants from a community situated in south west Nigeria. We conducted fifteen focus group sessions comprising 50 participants organized by age and sex, namely: 1) adult (>30 years) males, 2) adult females, 3) youth (18–30 years) males, and 4) youth females. A mixed age-group was conducted to probe different views between the age groups. There was discordance and clear division between the adults and youths regarding the decision to participate in genomic research based on commitment to communal values. Adults based their decision to participate on altruism and furthering the common good while youths based their decisions on personal benefits and preferences and also took into account the views and welfare of family members and neighbours. CONCLUSIONS: This discordance suggests a ‘generational shift’ and we advance a model of ‘relative solidarity’ among the youths, which is different from the communal solidarity model typical of African communitarianism. Our findings suggest the need for a closer look at strategies for implementation of community engagement and informed consent in genomic research in this region, and we recommend further studies to explore this emerging trend.
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spelling pubmed-58864792018-04-20 Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting Ogunrin, Olubunmi Woolfall, Kerry Gabbay, Mark Frith, Lucy PLoS One Research Article OBJECTIVE: As genomic research gathers momentum in sub-Saharan Africa, it has become increasingly important to understand the reasons why individuals wish to participate in this kind of medical research. Against the background of communitarianism conceived as typical of African communities, it is often suggested that individuals consent to participate on the grounds of solidarity and to further the common good. In this paper, we seek to explore this contention by presenting data from focus groups with potential research participants about what would influence their decisions to participate in genomic research. METHODS AND RESULTS: These focus groups were conducted as part of a larger qualitative study with a purposively selected group of participants from a community situated in south west Nigeria. We conducted fifteen focus group sessions comprising 50 participants organized by age and sex, namely: 1) adult (>30 years) males, 2) adult females, 3) youth (18–30 years) males, and 4) youth females. A mixed age-group was conducted to probe different views between the age groups. There was discordance and clear division between the adults and youths regarding the decision to participate in genomic research based on commitment to communal values. Adults based their decision to participate on altruism and furthering the common good while youths based their decisions on personal benefits and preferences and also took into account the views and welfare of family members and neighbours. CONCLUSIONS: This discordance suggests a ‘generational shift’ and we advance a model of ‘relative solidarity’ among the youths, which is different from the communal solidarity model typical of African communitarianism. Our findings suggest the need for a closer look at strategies for implementation of community engagement and informed consent in genomic research in this region, and we recommend further studies to explore this emerging trend. Public Library of Science 2018-04-05 /pmc/articles/PMC5886479/ /pubmed/29621313 http://dx.doi.org/10.1371/journal.pone.0195171 Text en © 2018 Ogunrin et al http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Ogunrin, Olubunmi
Woolfall, Kerry
Gabbay, Mark
Frith, Lucy
Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting
title Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting
title_full Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting
title_fullStr Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting
title_full_unstemmed Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting
title_short Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting
title_sort relative solidarity: conceptualising communal participation in genomic research among potential research participants in a developing sub-saharan african setting
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5886479/
https://www.ncbi.nlm.nih.gov/pubmed/29621313
http://dx.doi.org/10.1371/journal.pone.0195171
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