Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research

Abstract

Background: Genetic research can yield information that is unrelated to the study's objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent.

Methods: We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.

Results: A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research.

Discussion: Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination.

Keywords: Africa; Feedback; Genomics research; Incidental findings; Individual genetic research results.

Fig. 1

Returning individual genetic results

Fig. 2

Views on returning genetic results to paediatric patients. *Data are number (percentage) of respondents. Because the question required a tick all that applies, percentages may not add up to 100 they are more.

Fig. 3

Kinds of genetic results to be feedback

Fig. 4

At which point should consent to receive findings be given

Fig. 5

Disclosing results when participant chose not to receive

Fig. 6

Actionable findings

Fig. 7

Standard of care

Fig. 8

Standard of care across different projects

Fig. 9

Reproductive decision making

Fig. 10

Cost of feeding back findings