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  1. Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa.Janet Seeley, Emily B. Wong, Mark J. Siedner, Olivier Koole, Dickman Gareta, Resign Gunda, Dumsani Gumede, Nothando Ngwenya & Manono Luthuli - 2022 - BMC Medical Ethics 23 (1):1-11.
    BackgroundLimited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa.MethodsSemi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that (...)
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  • Editorial – ethical practice and genomic research.Michael Parker & Janet Seeley - 2020 - Global Bioethics 31 (1):164-168.
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  • Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study.Erisa Sabakaki Mwaka, Deborah Ekusai Sebatta, Joseph Ochieng, Ian Guyton Munabi, Godfrey Bagenda, Deborah Ainembabazi & David Kaawa-Mafigiri - 2021 - Global Bioethics 32 (1):15-33.
    Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers’ perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or genomic research. A thematic approach was used to interpret the results. The four themes that emerged from the data were the need for return of individual results including incidental findings, community engagement and the consenting process, implications and challenges to (...)
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  • Opinions and attitudes of research ethics committees in Arab countries in the Middle East and North African region toward ethical issues involving biobank research.Zeinab Mohammed, Fatma Abdelgawad, Mamoun Ahram, Maha E. Ibrahim, Alya Elgamri, Ehsan Gamel, Latifa Adarmouch, Karima El Rhazi, Samar Abd ElHafeez & Henry Silverman - 2024 - Research Ethics 20 (1):1-18.
    Members of research ethics committees (RECs) face a number of ethical challenges when reviewing genomic research. These include issues regarding the content and type of consent, the return of individual research results, mechanisms of sharing specimens and health data, and appropriate community engagement efforts. This article presents the findings from a survey that sought to investigate the opinions and attitudes of REC members from four Arab countries in the Middle East and North Africa (Egypt, Morocco, Sudan, and Jordan) toward these (...)
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  • Broad consent for biobank research in South Africa - Towards an enabling ethico-legal framework.Mantombi Maseme, Jillian Gardner & Safia Mahomed - 2024 - Global Bioethics 35 (1).
    Broad consent is permitted by the South African National Department of Health Ethics Guidelines but appears to be prohibited by section 13(1) of the Protection of Personal Information Act 4 of 2013. Additionally, the Act mandates that all personal data (including biobank sample data) be collected for lawful, explicit, and clearly defined purposes. There is possibility for ambiguity in interpretation because of this discrepancy between the two instruments. Given the association between the transfer of samples and data, the long-term nature (...)
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