Attitudes among South African university staff and students towards disclosing secondary genetic findings
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ORIGINAL ARTICLE
Attitudes among South African university staff and students towards disclosing secondary genetic findings Georgina Spies 1 & Jolynne Mokaya 2 & Jacqui Steadman 1 & Nicole Schuitmaker 1 & Martin Kidd 3 & S. M. J. Hemmings 1 & Jonathan A. Carr 4 & Helena Kuivaniemi 1,5 & Soraya Seedat 1 & For the SHARED ROOTS Group Received: 5 May 2020 / Accepted: 8 November 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
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
Introduction The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions. * Georgina Spies [email protected] 1
South African Research Chairs Initiative: PTSD programme, Department of Psychiatry, Faculty of Medicine and Health Sciences, Stellenbosch University, P.O. Box 241, Cape Town 8000, South Africa
2
Hertford College, University of Oxford, Oxford, UK
3
Centre for Statistical Consultation, Department of Statistics and Actuarial Sciences, Stellenbosch University, Stellenbosch, South Africa
4
Division of Neurology, Faculty of Medicine and Health Sciences, Stellenbosch University, Tygerberg, South Africa
5
Division of Molecular Biology and Human Genetics, Department of Biomedical Sciences, Stellenbosch University, Tygerberg, South Africa
The widespread integration of genomic methods and approaches across the life sciences and, increasingly, into medicine and society are evident (Green et al. 2020). Technological advances have resulted in the identification of thousands of genetic variants associated with both common and rare diseases in genomic studies and have led to an increase in the number of genetic tests available in both research and clinical pract
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