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Attitudes among South African university staff and students towards disclosing secondary genetic findings.
Spies, Georgina; Mokaya, Jolynne; Steadman, Jacqui; Schuitmaker, Nicole; Kidd, Martin; Hemmings, S M J; Carr, Jonathan A; Kuivaniemi, Helena; Seedat, Soraya.
Afiliação
  • Spies G; 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. ggiocos@sun.ac.za.
  • Mokaya J; Hertford College, University of Oxford, Oxford, UK.
  • Steadman J; 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.
  • Schuitmaker N; 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.
  • Kidd M; Centre for Statistical Consultation, Department of Statistics and Actuarial Sciences, Stellenbosch University, Stellenbosch, South Africa.
  • Hemmings SMJ; 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.
  • Carr JA; Division of Neurology, Faculty of Medicine and Health Sciences, Stellenbosch University, Tygerberg, South Africa.
  • Kuivaniemi H; 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.
  • Seedat S; Division of Molecular Biology and Human Genetics, Department of Biomedical Sciences, Stellenbosch University, Tygerberg, South Africa.
J Community Genet ; 12(1): 171-184, 2021 Jan.
Article em En | MEDLINE | ID: mdl-33219499
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.
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Texto completo: 1 Base de dados: MEDLINE Idioma: En Ano de publicação: 2021 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Idioma: En Ano de publicação: 2021 Tipo de documento: Article