Attitudes among South African university staff and students towards disclosing secondary genetic findings

Abstract

The present study represents an initial step in understanding diverse academic perspectives on the disclosure of secondary findings (SFs) from genetic research conducted in Africa. Using an online survey completed by 674 university students and academic staff in South Africa, we elicited attitudes towards the return of SFs. Latent class analysis (LCA) was performed to classify sub-groups of participants according to their overall attitudes to returning SFs. We did not find substantial differences in attitudes towards the return of findings between staff and students. Overall, respondents were in favour of the return of SFs in genetics research, depending on the type. The majority of survey respondents (80%) indicated that research participants should be given the option of deciding whether to have genetic SFs returned. LCA revealed that the largest group (53%) comprised individuals with more favourable attitudes to the return of SFs in genetics research. Those with less favourable attitudes comprised only 4% of the sample. This study provides important insights that may, together with further empirical evidence, inform the development of research guidelines and policy to assist healthcare professionals and researchers. Keywords Secondary findings . Return of results . Genetics . South Africa * Georgina Spies

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

“…May become overly vigilant/lead to unnecessary appointments [88] Inability to make health changes [85] Concerns about availability of health or life insurance [ Do not consider themselves to be at risk [97] Lack of resources and clinical expertise [94] https://doi.org/10.1371/journal.pone.0258646.t005…”

Should institutions fund the feedback of individual findings in genomic research?

“…Yet, important questions remain about the return of individual genetic research results in African genomic 1. The majority of participants in empirical studies on genomic research think that high-impact or medically actionable findings should be returned, provided that they are clinically and analytically valid, of clinical utility, and participants have not expressed a contrary preference 2–4. These participants have been researchers, Institutional Review Board chairs and members, the public, geneticists and many stakeholders such as relatives 2 5.…”