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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...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Public Library of Science
2018
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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. |
format | Online Article Text |
id | pubmed-5886479 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | Public Library of Science |
record_format | MEDLINE/PubMed |
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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