Ethical challenges in obtaining informed consent for the genomic study of rheumatic heart disease: a qualitative study

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dc.contributor.advisorDe Vries, Jantinaen_ZA
dc.contributor.advisorMayosi, Bonganien_ZA
dc.contributor.authorMasiye, Francisen_ZA
dc.date.accessioned2016-07-28T11:10:21Z
dc.date.available2016-07-28T11:10:21Z
dc.date.issued2016en_ZA
dc.description.abstractINTRODUCTION: Advances in genetic and genomic research have introduced new challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for a genomic study on Rheumatic Heart Disease (RHDGen) at the University of Cape Town in South Africa. The main aim of the study was to understand the ethical challenges in obtaining informed consent in the RHDGen study. METHODS: We used a qualitative study methodology involving in-depth interviews and participant observations. Our research participants were RHDGen cases and controls as well as research staff involved in the recruitment of RHDGen research participants. In total, we conducted 32 in-depth interviews with RHDGen research participants, 2 in-depth interviews with research staff and 57 direct observations of the consent procedures of RHDGen research participants. The in-depth interviews were conducted in English, audio-recorded and transcribed verbatim. All the data were analysed using thematic content analysis. The study was conducted in 3 sites within Cape Town, South Africa, and these sites were the Groote Schuur Hospital in Observatory, the Vanguard Community Health Centre in Bonteheuwel and the Heideveld Community in the Cape Flats.en_ZA
dc.identifier.apacitationMasiye, F. (2016). <i>Ethical challenges in obtaining informed consent for the genomic study of rheumatic heart disease: a qualitative study</i>. (Thesis). University of Cape Town ,Faculty of Health Sciences ,Centre for Bioethics. Retrieved from http://hdl.handle.net/11427/20915en_ZA
dc.identifier.chicagocitationMasiye, Francis. <i>"Ethical challenges in obtaining informed consent for the genomic study of rheumatic heart disease: a qualitative study."</i> Thesis., University of Cape Town ,Faculty of Health Sciences ,Centre for Bioethics, 2016. http://hdl.handle.net/11427/20915en_ZA
dc.identifier.citationMasiye, F. 2016. Ethical challenges in obtaining informed consent for the genomic study of rheumatic heart disease: a qualitative study. University of Cape Town.en_ZA
dc.identifier.ris TY - Thesis / Dissertation AU - Masiye, Francis AB - INTRODUCTION: Advances in genetic and genomic research have introduced new challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for a genomic study on Rheumatic Heart Disease (RHDGen) at the University of Cape Town in South Africa. The main aim of the study was to understand the ethical challenges in obtaining informed consent in the RHDGen study. METHODS: We used a qualitative study methodology involving in-depth interviews and participant observations. Our research participants were RHDGen cases and controls as well as research staff involved in the recruitment of RHDGen research participants. In total, we conducted 32 in-depth interviews with RHDGen research participants, 2 in-depth interviews with research staff and 57 direct observations of the consent procedures of RHDGen research participants. The in-depth interviews were conducted in English, audio-recorded and transcribed verbatim. All the data were analysed using thematic content analysis. The study was conducted in 3 sites within Cape Town, South Africa, and these sites were the Groote Schuur Hospital in Observatory, the Vanguard Community Health Centre in Bonteheuwel and the Heideveld Community in the Cape Flats. DA - 2016 DB - OpenUCT DP - University of Cape Town LK - https://open.uct.ac.za PB - University of Cape Town PY - 2016 T1 - Ethical challenges in obtaining informed consent for the genomic study of rheumatic heart disease: a qualitative study TI - Ethical challenges in obtaining informed consent for the genomic study of rheumatic heart disease: a qualitative study UR - http://hdl.handle.net/11427/20915 ER - en_ZA
dc.identifier.urihttp://hdl.handle.net/11427/20915
dc.identifier.vancouvercitationMasiye F. Ethical challenges in obtaining informed consent for the genomic study of rheumatic heart disease: a qualitative study. [Thesis]. University of Cape Town ,Faculty of Health Sciences ,Centre for Bioethics, 2016 [cited yyyy month dd]. Available from: http://hdl.handle.net/11427/20915en_ZA
dc.language.isoengen_ZA
dc.publisher.departmentCentre for Bioethicsen_ZA
dc.publisher.facultyFaculty of Health Sciencesen_ZA
dc.publisher.institutionUniversity of Cape Town
dc.subject.otherBioethicsen_ZA
dc.titleEthical challenges in obtaining informed consent for the genomic study of rheumatic heart disease: a qualitative studyen_ZA
dc.typeMaster Thesis
dc.type.qualificationlevelMasters
dc.type.qualificationnameMSc (Med)en_ZA
uct.type.filetypeText
uct.type.filetypeImage
uct.type.publicationResearchen_ZA
uct.type.resourceThesisen_ZA
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