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  1. Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case study.Ann Strode & Zaynab Essack - 2022 - BMC Medical Ethics 23 (1):1-6.
    Background The South African legal framework requires mandatory parental/legal guardian consent for all research with children. Ethics guidelines provide some reprieve by allowing RECs to grant waivers of parental or guardianship consent in certain defined circumstances. In the first instance, consent may be provided by a proxy when parents or guardians are unavailable, for example with orphaned children. In the second instance, guidelines permit adolescent self-consent when the nature of the study justifies this approach, for example, research on sensitive issues (...)
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  • The complex case of Ellie Anderson.Joona Räsänen & Anna Smajdor - 2022 - Journal of Medical Ethics 48 (4):217-221.
    Ellie Anderson had always known that she wanted to have children. Her mother, Louise, was aware of this wish. Ellie was designated male at birth, but according to news sources, identified as a girl from the age of three. She was hoping to undergo gender reassignment surgery at 18, but died unexpectedly at only 16, leaving Louise grappling not only with the grief of losing her daughter, but with a complex legal problem. Ellie had had her sperm frozen before starting (...)
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  • Relational Autonomy as a Way to Recognise and Enhance Children’s Capacity and Agency to be Participatory Research Actors.Janice McLaughlin - 2020 - Ethics and Social Welfare 14 (2):204-219.
    There has been a marked increase in the active involvement of children and young people in social research. This move is underpinned by rights based arguments that children and young people should have a voice, and that this voice should be listened to. However, concerns have been raised about the appropriateness of children’s and young people’s rights and participation in research. This is primarily due to queries over whether they have enough capacity to enact the individual agency required to be (...)
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  • How not to argue against mandatory ethics review.David Hunter - 2013 - Journal of Medical Ethics 39 (8):521-524.
    There is considerable controversy about the mandatory ethics review of research. This paper engages with the arguments offered by Murray Dyck and Gary Allen against mandatory review, namely, that this regulation fails to reach the standards that research ethics committees apply to research since it is harmful to the ethics of researchers, has little positive evidence base, leads to significant harms (through delaying valuable research) and distorts the nature of research. As these are commonplace arguments offered by researchers against regulation (...)
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  • The Neuroscience of Decision Making and Our Standards for Assessing Competence to Consent.Steve Clarke - 2011 - Neuroethics 6 (1):189-196.
    Rapid advances in neuroscience may enable us to identify the neural correlates of ordinary decision making. Such knowledge opens up the possibility of acquiring highly accurate information about people’s competence to consent to medical procedures and to participate in medical research. Currently we are unable to determine competence to consent with accuracy and we make a number of unrealistic practical assumptions to deal with our ignorance. Here I argue that if we are able to detect competence to consent and if (...)
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  • What is presumed when we presume consent?Barbara K. Pierscionek - 2008 - BMC Medical Ethics 9 (1):8.
    The organ donor shortfall in the UK has prompted calls to introduce legislation to allow for presumed consent: if there is no explicit objection to donation of an organ, consent should be presumed. The current debate has not taken in account accepted meanings of presumption in law and science and the consequences for rights of ownership that would arise should presumed consent become law. In addition, arguments revolve around the rights of the competent autonomous adult but do not always consider (...)
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