Abstract
ObjectiveAs 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 resultsThese 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.ConclusionsThis 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.
Highlights
Genomic research activity has grown in sub-Saharan Africa over the last decade and a half
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
A study conducted in a different context to assess and identify the factors associated with the public’s willingness to participate in genomic research among a Swedish population, found that most people had a positive attitude towards biobanking research, and those more likely to donate body samples were middle-aged men who were mainly driven by altruism [5]
Summary
Genomic research activity has grown in sub-Saharan Africa over the last decade and a half. Tindana et al showed that genomic research stakeholders in Ghana and Kenya were concerned about culturally appropriate consent for sample export and reuse, and there was a need to understand cultural sensitivities around the use of blood samples [3] These reports drew attention to the influence of community-related ethical issues on the willingness of individuals in African communities to participate in genomic research. A study conducted in a different context to assess and identify the factors associated with the public’s willingness to participate in genomic research among a Swedish population, found that most people had a positive attitude towards biobanking research, and those more likely to donate body samples were middle-aged men who were mainly driven by altruism [5] These studies illustrate a diversity of opinions among people from different communities, and the cultural location of people’s experiences clearly affect how research participation is framed and the willingness to participate. Such diversity underscores the importance of investigating the opinions and views of individuals in specific contexts to understand what informs their decisions to participate in genomic research
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