Informed consent and community engagement in genomic research [PhD THESIS]

Informed consent and community engagement in genomic research [PhD THESIS]
Ogunrin, O. A.
University of Liverpool, 2019
Abstract
The introduction of genomic research to, and emergence of biobanks in, sub-Saharan African countries raise ethical issues that require urgent attention. Firstly, there are concerns about whether individuals and communities would agree to participate in this type of research especially considering how communitarianism may affect their decision-making process. Secondly, there are controversies over whether the informed consent process as it is applied to other biomedical researches would be appropriate for genomic research in sub-Saharan Africa. And thirdly, the components of engagement of culturally distinct communities in genomic research are not yet clarified… There was consensus between the adult research participants and the biomedical researchers on the appropriateness of blanket consent type for genomic research but the community leaders, health workers and the youths prefer either reconsenting or delegated consent…