Genomic Literacy and Awareness of Ethical Guidance for Genomic Research in Sub-Saharan Africa: How Prepared Are Biomedical Researchers?

Abstract

Achieving the objectives of rolling out genomic research programs in sub-Saharan Africa depends on how prepared indigenous biomedical researchers are for this type of research. We explored the level of preparedness of biomedical researchers in a sub-Saharan African country using in-depth interviews to obtain data on their understanding of genomics and genomic research and assess their awareness of the scope of the country's code of health research ethics. Thirty biomedical researchers were interviewed. Only eight were familiar with concepts of genomics, a form of "genomic health literacy." The majority were not aware of the country's code of research ethics. This study showed that generally biomedical researchers were not genomic health literate, unaware of the code and its limitations as a source of ethical guidance for the conduct of genomic research. These findings underscore the need for educational training in genomics and creating awareness of ethical oversight for genomic research in sub-Saharan Africa.

Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study

“…Valid informed consent demands that the participant makes a voluntary decision after adequately understanding relevant information concerning the study. However, interviewees observed that local investigators, RECs and the general public have limited understanding of genetics; but this is not unique to Uganda only (Ogunrin et al, 2019;Stein et al, 2019;van Wyk et al, 2016;Vos et al, 2017). Because of this, authors have proposed community engagement models that aim to optimize informed consent processes (Beaton et al, 2017;Moodley & Beyer, 2019;Tindana et al, 2017;Tindana et al, 2015).…”

Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study

“…However, this is contrary to our findings because low literacy came out as a strong barrier to the comprehension required for valid consent. This difference may arise from the fact that our study was specific to the understanding of genetics information which is regarded as difficult to understand for both investigators and research participants alike in low and middle-income countries (Chokshi et al, 2007; Marsh et al, 2010; Marshall et al, 2006; Masiye et al, 2017; Ogunrin et al, 2019; Tindana et al, 2012; Traore et al, 2015). None of the clinical trials investigated by Ssali et al (2016) involved genetics or genomic procedures.…”

“…Literature has indicated that therapeutic misconception, whereby research participants believe that the research is being conducted primarily for their own benefit rather than for creating generalizable knowledge or the benefit of future patients, also poses a problem in some settings (Appelbaum et al, 2002; Dehority, 2021; Thong et al, 2016). A number of studies reveal poor understanding of genetics research by participants in resource-limited settings (Chokshi et al, 2007; Corneli et al, 2012; Marsh et al, 2010; Marshall et al, 2006; Masiye et al, 2017; Ogunrin et al, 2019; Tindana et al, 2012; Traore et al, 2015). Thus, since adequate comprehension of information is required for informed consent to be valid, it is imperative to inquire into how participants’ comprehension is being verified or can be enhanced by researchers.…”

Understanding of Critical Elements of Informed Consent in Genomic Research: A Case of a Paediatric HIV-TB Research Project in Uganda

“…This might be due to the non-physical nature of risks involved in genomic and genetics research and the uncertainty of the future studies at the time of consenting. Generally, the poor understanding of genetics-related information is not limited to research participants only, studies have shown that various stakeholders, including investigators have limited understanding of genetic and genomic concepts (Kengne-Ouafo et al, 2016; Mwaka et al, 2021; Ogunrin et al, 2019; Tindana et al, 2012). Therefore, we would not expect a research participant to adequately understand informed consent when the investigator obtaining it does not sufficiently understand genetics and genomic research and its implications.…”