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



Ogunrin, Olubunmi ORCID: 0000-0002-0006-291X, Woolfall, Kerry ORCID: 0000-0002-5726-5304, Gabbay, Mark ORCID: 0000-0002-0126-8485 and Frith, Lucy ORCID: 0000-0002-8506-0699
(2018) Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting. PLOS ONE, 13 (4). e0195171-.

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Abstract

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.

Item Type: Article
Uncontrolled Keywords: Genomic medicine, Human families, Social media, Bioethics, Drug research and development, Social networks, Decision making, Age groups
Depositing User: Symplectic Admin
Date Deposited: 10 Apr 2018 09:20
Last Modified: 19 Jan 2023 06:36
DOI: 10.1371/journal.pone.0195171
Related URLs:
URI: https://livrepository.liverpool.ac.uk/id/eprint/3020003