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  1. From “Ought” to “Is”: Surfacing Values in Patient and Family Advocacy in Rare Diseases.Meghan C. Halley - 2021 - American Journal of Bioethics 21 (12):1-3.
    In this issue, Lynch and colleagues discuss lessons learned from the “Operation Warp Speed” response to the COVID-19 pandemic in the United States—both about what to do and what not to do fo...
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  • Resource Allocation in the Covid-19 Health Crisis: Are Covid-19 Preventive Measures Consistent with the Rule of Rescue?Julian W. März, Søren Holm & Michael Schlander - 2021 - Medicine, Health Care and Philosophy 24 (4):487-492.
    The Covid-19 pandemic has led to a health crisis of a scale unprecedented in post-war Europe. In response, a large amount of healthcare resources have been redirected to Covid-19 preventive measures, for instance population-wide vaccination campaigns, large-scale SARS-CoV-2 testing, and the large-scale distribution of protective equipment to high-risk groups and hospitals and nursing homes. Despite the importance of these measures in epidemiological and economic terms, health economists and medical ethicists have been relatively silent about the ethical rationales underlying the large-scale (...)
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  • Explaining Rule of Rescue Obligations in Healthcare Allocation: Allowing the Patient to Tell the Right Kind of Story About Their Life.Sean Sinclair - forthcoming - Medicine, Health Care and Philosophy.
    I consider various principles which might explain our intuitive obligation to rescue people from imminent death at great cost, even when the same resources could produce more benefit elsewhere. Our obligation to rescue is commonly explained in terms of the identifiability of the rescuee, but I reject this account. Instead, I offer two considerations which may come into play. Firstly, I explain the seeming importance of identifiability in terms of an intuitive obligation to prioritise life-extending interventions for people who face (...)
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  • For the Sake of Justice: Should We Prioritize Rare Diseases?Niklas Juth - 2017 - Health Care Analysis 25 (1):1-20.
    This article is about the justifiability of accepting worse cost effectiveness for orphan drugs, that is, treatments for rare diseases, in a publicly financed health care system. Recently, three arguments have been presented that may be used in favour of exceptionally advantageous economic terms for orphan drugs. These arguments share the common feature of all referring to considerations of justice or fairness: the argument of the irrelevance of group size, the argument from the principle of need, and the argument of (...)
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  • Does NICE Apply the Rule of Rescue in its Approach to Highly Specialised Technologies?Victoria Charlton - forthcoming - Journal of Medical Ethics:medethics-2020-106759.
    The National Institute for Health and Care Excellence, the UK’s main healthcare priority-setting body, recently reaffirmed a longstanding claim that in recommending technologies to the National Health Service it cannot apply the ‘rule of rescue’. This paper explores this claim by identifying key characteristics of the rule and establishing to what extent these are also features of NICE’s approach to evaluating ultra-orphan drugs through its highly specialised technologies programme. It argues that although NICE in all likelihood does not act because (...)
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  • Rescuing the Duty to Rescue.Tina Rulli & Joseph Millum - 2016 - Journal of Medical Ethics 42 (4):260-264.
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  • Rescuing the Duty to Rescue.Tina Rulli & Joseph Millum - 2014 - Journal of Medical Ethics:1-5.
    Clinicians and health researchers frequently encounter opportunities to rescue people. Rescue cases can generate a moral duty to aid those in peril. As such, bioethicists have leveraged a duty to rescue for a variety of purposes. Yet, despite its broad application, the duty to rescue is under-analyzed. In this paper, we assess the state of theorizing about the duty to rescue. There are large gaps in bioethicists’ understanding of the force, scope, and justification of the two most cited duties to (...)
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  • Using Professional Organization Policy Statements to Guide Hospital Policies and Bedside Recommendations.Alexander A. Kon - 2016 - American Journal of Bioethics 16 (1):53-56.
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  • Health Care Organizations and the Power of Procedure.Emily A. Largent - 2016 - American Journal of Bioethics 16 (1):51-53.
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  • What Is the Value of Three-Parent IVF?Tina Rulli - 2016 - Hastings Center Report 46 (4):38-47.
    In February 2016, the Institute of Medicine released a report, commissioned by the United States Food and Drug Administration, on the ethical and social-policy implications of so-called three-parent in vitro fertilization. The IOM endorses commencement of clinical trials on three-parent IVF, subject to some initial limitations. Also called mitochondrial replacement or transfer, three-parent IVF is an intervention comprising two distinct procedures in which the genetic materials of three people—the DNA of the father and mother and the mitochondrial DNA of an (...)
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