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Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia

Problemi di bioetica, 2020, Vol.31 (1), p.184-199 [Peer Reviewed Journal]

2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group 2019 ;2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. ;2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This work is licensed under the Creative Commons Attribution License http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. ;2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group 2019 The Author(s) ;ISSN: 1128-7462 ;EISSN: 1591-7398 ;DOI: 10.1080/11287462.2019.1592868 ;PMID: 33343192

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  • Title:
    Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia
  • Author: Mweemba, Oliver ; Musuku, John ; Mayosi, Bongani M. ; Parker, Michael ; Rutakumwa, Rwamahe ; Seeley, Janet ; Tindana, Paulina ; De Vries, Jantina
  • Subjects: bio-banking ; broad consent ; Cardiovascular disease ; Consent ; Consent in genomics research in sub-Saharan Africa ; Genomics ; H3Africa ; Zambia
  • Is Part Of: Problemi di bioetica, 2020, Vol.31 (1), p.184-199
  • Description: The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use.
  • Publisher: England: Routledge
  • Language: English;French;German;Italian
  • Identifier: ISSN: 1128-7462
    EISSN: 1591-7398
    DOI: 10.1080/11287462.2019.1592868
    PMID: 33343192
  • Source: Taylor & Francis Open Access
    PubMed Central
    ProQuest Central
    DOAJ Directory of Open Access Journals
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