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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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  • Managing Incidental Findings: Lessons From Neuroimaging.Emily Borgelt, James A. Anderson & Judy Illes - 2013 - American Journal of Bioethics 13 (2):46-47.
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  • Emerging issues in paediatric health research consent forms in Canada: working towards best practices. [REVIEW]Edward S. Dove, Denise Avard, Lee Black & Bartha M. Knoppers - 2013 - BMC Medical Ethics 14 (1):1-10.
    BackgroundObtaining a research participant’s voluntary and informed consent is the bedrock of sound ethics practice. Greater inclusion of children in research has led to questions about how paediatric consent operates in practice to accord with current and emerging legal and socio-ethical issues, norms, and requirements.MethodsEmploying a qualitative thematic content analysis, we examined paediatric consent forms from major academic centres and public organisations across Canada dated from 2008–2011, which were purposively selected to reflect different types of research ethics boards, participants, and (...)
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  • Human dignity as a basis for providing post-trial access to healthcare for research participants: a South African perspective.Pamela Andanda & Jane Wathuta - 2018 - Medicine, Health Care and Philosophy 21 (1):139-155.
    This paper discusses the need to focus on the dignity of human participants as a legal and ethical basis for providing post-trial access to healthcare. Debate about post-trial benefits has mostly focused on access to products or interventions proven to be effective in clinical trials. However, such access may be modelled on a broad fair benefits framework that emphasises both collateral benefits and interventional products of research, instead of prescribed post-trial access alone. The wording of the current version of the (...)
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  • “That is why I have trust”: unpacking what ‘trust’ means to participants in international genetic research in Pakistan and Denmark.Zainab Sheikh & Klaus Hoeyer - 2018 - Medicine, Health Care and Philosophy 21 (2):169-179.
    Trust features prominently in a number of policy documents that have been issued in recent years to facilitate data sharing and international collaboration in medical research. However, it often remains unclear what is meant by ‘trust’. By exploring a concrete international collaboration between Denmark and Pakistan, we develop a way of unpacking trust that shifts focus from what trust ‘is’ to what people invest in relationships and what references to trust do for them in these relationships. Based on interviews in (...)
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  • Two basic ethical problems of incidental findings in population‐based, non‐intervening magnetic resonance imaging (MRI) research.Martin Hoffmann - 2013 - Journal of Evaluation in Clinical Practice 19 (3):427-432.
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