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  1. At the cross-roads of participatory research and biomarker discovery in autism: the need for empirical data.Afiqah Yusuf & Mayada Elsabbagh - 2015 - BMC Medical Ethics 16 (1):1-9.
    BackgroundIdentifying biomarkers for autism can improve outcomes for those affected by autism. Engaging the diverse stakeholders in the research process using community-based participatory research can accelerate biomarker discovery into clinical applications. However, there are limited examples of stakeholder involvement in autism research, possibly due to conceptual and practical concerns. We evaluate the applicability of CBPR principles to biomarker discovery in autism and critically review empirical studies adopting these principles.MethodsUsing a scoping review methodology, we identified and evaluated seven studies using CBPR (...)
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  • Ethical Justifications for Access to Unapproved Medical Interventions: An Argument for (Limited) Patient Obligations.Mary Jean Walker, Wendy A. Rogers & Vikki Entwistle - 2014 - American Journal of Bioethics 14 (11):3-15.
    Many health care systems include programs that allow patients in exceptional circumstances to access medical interventions of as yet unproven benefit. In this article we consider the ethical justifications for—and demands on—these special access programs (SAPs). SAPs have a compassionate basis: They give patients with limited options the opportunity to try interventions that are not yet approved by standard regulatory processes. But while they signal that health care systems can and will respond to individual suffering, SAPs have several disadvantages, including (...)
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  • Cautions for Extending Fecal Microbiota Transplantation to Other Therapeutic Uses.Rosamond Rhodes & Henry Sacks - 2017 - American Journal of Bioethics 17 (5):46-48.
    In their article “Ethical Issues in Fecal Microbiota Transplantation in Practice,” Ma and colleagues (2017) raise a number of questions related to the development of fecal microbiota transplants (F...
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  • Fecal Transplant Bioethics: Beyond Chicken Little.John Huss - 2017 - American Journal of Bioethics 17 (5):48-50.
  • Innovative Practice, Clinical Research, and the Ethical Advancement of Medicine.Jake Earl - 2019 - American Journal of Bioethics 19 (6):7-18.
    Innovative practice occurs when a clinician provides something new, untested, or nonstandard to a patient in the course of clinical care, rather than as part of a research study. Commentators have noted that patients engaged in innovative practice are at significant risk of suffering harm, exploitation, or autonomy violations. By creating a pathway for harmful or nonbeneficial interventions to spread within medical practice without being subjected to rigorous scientific evaluation, innovative practice poses similar risks to the wider community of patients (...)
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  • Proposal for Patient Obligations for Access to Unapproved Medical Interventions: Both Too Much and Not Enough.Audrey Chapman - 2014 - American Journal of Bioethics 14 (11):25-26.
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  • Off-trial access to experimental cancer agents for the terminally ill: balancing the needs of individuals and society.M. Chahal - 2010 - Journal of Medical Ethics 36 (6):367-370.
    The development of cancer therapies is a long and arduous process. Because it can take several years for a cancer agent to pass clinical testing and be approved for use, terminal cancer patients rarely have the time to see these experimental therapies become widely available. For most terminal cancer patients the only opportunity they have to access an experimental drug that could potentially improve their prognosis is by joining a clinical trial. Unfortunately, several aspects of clinical trial methodology that are (...)
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  • Conceptualising Surgical Innovation: An Eliminativist Proposal.Giles Birchley, Jonathan Ives, Richard Huxtable & Jane Blazeby - 2020 - Health Care Analysis 28 (1):73-97.
    Improving surgical interventions is key to improving outcomes. Ensuring the safe and transparent translation of such improvements is essential. Evaluation and governance initiatives, including the IDEAL framework and the Macquarie Surgical Innovation Identification Tool have begun to address this. Yet without a definition of innovation that allows non-surgeons to identify when it is occurring, these initiatives are of limited value. A definition seems elusive, so we undertook a conceptual study of surgical innovation. This indicated common conceptual areas in discussions of (...)
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  • Charlie Gard and the weight of parental rights to seek experimental treatment.Giles Birchley - 2018 - Journal of Medical Ethics 44 (7):448-452.
    The case of Charlie Gard, an infant with a genetic illness whose parents sought experimental treatment in the USA, brought important debates about the moral status of parents and children to the public eye. After setting out the facts of the case, this article considers some of these debates through the lens of parental rights. Parental rights are most commonly based on the promotion of a child’s welfare; however, in Charlie’s case, promotion of Charlie’s welfare cannot explain every fact of (...)
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