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  1.  3
    Cui Bono?Michael Ashby & Bronwen Morrell - 2020 - Journal of Bioethical Inquiry 17 (1):1-3.
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  2.  6
    Pharmaceutical Ethics and Grassroots Activism in the United States: A Social History Perspective.Sharon Batt, Judy Butler, Olivia Shannon & Adriane Fugh-Berman - 2020 - Journal of Bioethical Inquiry 17 (1):49-60.
    Women’s health activists laid the groundwork for passage of the law that created the U.S. Food and Drug Administration in 1906. The pharmaceutical and food industries fought regulatory reforms then and continue to do so now. We examine public health activism in the Progressive Era, the postwar era and the present day. The women’s health movement began in the 1960s, and criticized both the pharmaceutical industry and the medical establishment. In the 1990s, patient advocacy groups began accepting industry funds; thousands (...)
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  3.  2
    Developing and Implementing New TB Technologies: Key Informants’ Perspectives on the Ethical Challenges.Renaud F. Boulanger, Ana Komparic, Angus Dawson, Ross E. G. Upshur & Diego S. Silva - 2020 - Journal of Bioethical Inquiry 17 (1):65-73.
    ObjectiveTo identify the ethical challenges associated with the development and implementation of new tuberculosis drugs and diagnostics.MethodsTwenty-three semi-structured qualitative interviews conducted between December 2015 and September 2016 with programme administrators, healthcare workers, advocates, policymakers, and funders based in the Americas, Europe, and Africa. Interviews were analysed using thematic analysis.ResultsDivergent interests and responsibilities, coupled with power imbalances, are a primary source of ethical challenges; the uncertain risk profiles of new drugs present an additional one. Although this challenge can be partially mitigated (...)
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  4.  3
    Does Consumer Engagement in Health Technology Assessment Enhance or Undermine Equity?Narcyz Ghinea, Wendy Lipworth & Ian Kerridge - 2020 - Journal of Bioethical Inquiry 17 (1):87-94.
    Consumer engagement in decisions about the funding of medicines is often framed as a good in and of itself and as an activity that should be universally encouraged. A common justification for calls for consumer engagement is that it enhances equity. In this paper we systematically critique this assumption. We show that consumer engagement may undermine equity as well as enhance it and show that a simple relationship cannot be assumed but must be justified and demonstrated. In concluding, we present (...)
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  5.  2
    Lead Essay: Money, Equity and Access to Medicines.Narcyz Ghinea, Wendy Lipworth & Ian Kerridge - 2020 - Journal of Bioethical Inquiry 17 (1):25-27.
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  6.  1
    Elective Impairment Minus Elective Disability: The Social Model of Disability and Body Integrity Identity Disorder.Richard B. Gibson - 2020 - Journal of Bioethical Inquiry 17 (1):145-155.
    Individuals with body integrity identity disorder seek to address a non-delusional incongruity between their body image and their physical embodiment, sometimes via the surgical amputation of healthy body parts. Opponents to the provision of therapeutic healthy-limb amputation in cases of BIID make appeals to the envisioned harms that such an intervention would cause, harms such as the creation of a lifelong physical disability where none existed before. However, this concept of harm is often based on a normative biomedical model of (...)
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  7.  4
    Elective Impairment Minus Elective Disability: The Social Model of Disability and Body Integrity Identity Disorder.Richard B. Gibson - 2020 - Journal of Bioethical Inquiry 17 (1):145-155.
    Individuals with body integrity identity disorder seek to address a non-delusional incongruity between their body image and their physical embodiment, sometimes via the surgical amputation of healthy body parts. Opponents to the provision of therapeutic healthy-limb amputation in cases of BIID make appeals to the envisioned harms that such an intervention would cause, harms such as the creation of a lifelong physical disability where none existed before. However, this concept of harm is often based on a normative biomedical model of (...)
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  8.  2
    Elective Impairment Minus Elective Disability: The Social Model of Disability and Body Integrity Identity Disorder.Richard B. Gibson - 2020 - Journal of Bioethical Inquiry 17 (1):145-155.
    Individuals with body integrity identity disorder seek to address a non-delusional incongruity between their body image and their physical embodiment, sometimes via the surgical amputation of healthy body parts. Opponents to the provision of therapeutic healthy-limb amputation in cases of BIID make appeals to the envisioned harms that such an intervention would cause, harms such as the creation of a lifelong physical disability where none existed before. However, this concept of harm is often based on a normative biomedical model of (...)
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  9.  3
    Elective Impairment Minus Elective Disability: The Social Model of Disability and Body Integrity Identity Disorder.Richard B. Gibson - 2020 - Journal of Bioethical Inquiry 17 (1):145-155.
    Individuals with body integrity identity disorder seek to address a non-delusional incongruity between their body image and their physical embodiment, sometimes via the surgical amputation of healthy body parts. Opponents to the provision of therapeutic healthy-limb amputation in cases of BIID make appeals to the envisioned harms that such an intervention would cause, harms such as the creation of a lifelong physical disability where none existed before. However, this concept of harm is often based on a normative biomedical model of (...)
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  10.  3
    Deciding For When You Can’T Decide: The Medical Treatment Planning and Decisions Act 2016.Courtney Hempton & Neera Bhatia - 2020 - Journal of Bioethical Inquiry 17 (1):109-120.
    The Australian state of Victoria introduced new legislation regulating medical treatment and associated decision-making in March 2018. In this article we provide an overview of the new Medical Treatment Planning and Decisions Act 2016 and compare it to the former Medical Treatment Act 1988. Most substantially, the new Act provides for persons with relevant decision-making capacity to make decisions in advance regarding their potential future medical care, to take effect in the event they themselves do not have decision-making capacity. Prima (...)
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  11.  9
    Why High Drug Pricing Is A Problem for Research Ethics.Spencer Phillips Hey - 2020 - Journal of Bioethical Inquiry 17 (1):29-35.
    The high price of drugs is receiving due consideration from ethicists, policymakers, and legislators. However, much of this attention has focused on the difference between the cost of drug development and company profits and the possible laws and regulations that could limit a drug’s price once it reaches market. By contrast, little attention has been paid to the ethical implications of high drug prices for the research subjects whose bodies were essential to the drug’s development. Indeed, the future price of (...)
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  12.  2
    “Hunting Down My Son’s Killer”: New Roles of Patients in Treatment Discovery and Ethical Uncertainty.Marcello Ienca & Effy Vayena - 2020 - Journal of Bioethical Inquiry 17 (1):37-47.
    The past few years have witnessed several media-covered cases involving citizens actively engaging in the pursuit of experimental treatments for their medical conditions—or those of their loved ones—in the absence of established standards of therapy. This phenomenon is particularly observable in patients with rare genetic diseases, as the development of effective therapies for these disorders is hindered by the limited profitability and market value of pharmaceutical research. Sociotechnical trends at the cross-section of medicine and society are facilitating the involvement of (...)
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  13.  2
    A Continent Aflame: Ethical Lessons From the Australian Bushfire Disaster.Paul Komesaroff & Ian Kerridge - 2020 - Journal of Bioethical Inquiry 17 (1):11-14.
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  14. A Response to “Fragile Objects”.Paul Macneill - 2020 - Journal of Bioethical Inquiry 17 (1):21-23.
    This is a critical response to “Fragile objects: A visual essay,” by Chapman et al. published in the Journal of Bioethical Inquiry : 185-189). Whilst “Fragile objects” is evocative of the author’ experience in sitting with a man, who had been diagnosed with Alzheimer’s, I express concern that there are unwarranted and unsubstantiated conclusions drawn about Patrick’s phenomenological experience of dementia/Alzheimer’s.
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  15. A Response to “Fragile Objects”.Paul Macneill - 2020 - Journal of Bioethical Inquiry 17 (1):21-23.
    This is a critical response to “Fragile objects: A visual essay,” by Chapman et al. published in the Journal of Bioethical Inquiry : 185-189). Whilst “Fragile objects” is evocative of the author’ experience in sitting with a man, who had been diagnosed with Alzheimer’s, I express concern that there are unwarranted and unsubstantiated conclusions drawn about Patrick’s phenomenological experience of dementia/Alzheimer’s.
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  16. A Response to “Fragile Objects”.Paul Macneill - 2020 - Journal of Bioethical Inquiry 17 (1):21-23.
    This is a critical response to “Fragile objects: A visual essay,” by Chapman et al. published in the Journal of Bioethical Inquiry : 185-189). Whilst “Fragile objects” is evocative of the author’ experience in sitting with a man, who had been diagnosed with Alzheimer’s, I express concern that there are unwarranted and unsubstantiated conclusions drawn about Patrick’s phenomenological experience of dementia/Alzheimer’s.
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  17.  4
    New Zealand Policy on Frozen Embryo Disputes.Carolyn Mason - 2020 - Journal of Bioethical Inquiry 17 (1):121-131.
    Disputes between separated couples over whether frozen embryos can be used in an attempt to create a child create a moral dilemma for public policy. When a couple create embryos intending to parent any resulting children, New Zealand’s current policy requires the consent of both people at every stage of the ART process. New Zealand’s Advisory Committee on Assisted Reproductive Technology has proposed a policy change that would give ex-partners involved in an embryo dispute twelve months to come to an (...)
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  18.  1
    Commentary: The Voice of the People, Funded Now by Your Friendly Pharmaceutical Company.Ray Moynihan - 2020 - Journal of Bioethical Inquiry 17 (1):61-63.
    Pharmaceutical industry funding has transformed much grassroots community activism on health into corporate-sponsored advocacy. This critical commentary outlines recent evidence about industry funding of patient advocacy groups, offers a commentary on the history of grassroots activism appearing in this issue of the journal, and calls for greater scrutiny of the impacts and ethics of such sponsorship.
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  19.  14
    Beyond Mendelian Genetics: Anticipatory Biomedical Ethics and Policy Implications for the Use of CRISPR Together with Gene Drive in Humans.Michael W. Nestor & Richard L. Wilson - 2020 - Journal of Bioethical Inquiry 17 (1):133-144.
    Clustered regularly interspaced short palindromic repeats genome editing has already reinvented the direction of genetic and stem cell research. For more complex diseases it allows scientists to simultaneously create multiple genetic changes to a single cell. Technologies for correcting multiple mutations in an in vivo system are already in development. On the surface, the advent and use of gene editing technologies is a powerful tool to reduce human suffering by eradicating complex disease that has a genetic etiology. Gene drives are (...)
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  20.  2
    Formulating an Ethics of Pharmaceutical Disinvestment.Jessica Pace, Tracey-Lea Laba, Marie-Paul Nisingizwe & Wendy Lipworth - 2020 - Journal of Bioethical Inquiry 17 (1):75-86.
    There is growing interest among pharmaceutical policymakers in how to “disinvest” from subsidized medicines. This is due to both the rapidly rising costs of healthcare and the increasing use of accelerated and conditional reimbursement pathways which mean that medicines are being subsidized on the basis of less robust evidence of safety and efficacy. It is crucial that disinvestment decisions are morally sound and socially legitimate, but there is currently no framework to facilitate this. We therefore reviewed the bioethics literature in (...)
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  21.  1
    Balancing Interests in Healthcare: What Happens When Commercial Interests Outweigh Patient Welfare and a Brief Overview of the Swinging Pendulum of Informed Consent in Singapore.Bernadette Richards - 2020 - Journal of Bioethical Inquiry 17 (1):15-20.
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  22.  3
    The Consent Form in the Chinese CRISPR Study: In Search of Ethical Gene Editing.David Shaw - 2020 - Journal of Bioethical Inquiry 17 (1):5-10.
    This editorial provides an ethical analysis of the consent materials and other documents relating to the recent creation and birth of twin girls who had their genes edited using CRISPR-cas9 in a controversial Chinese research study. It also examines the “draft ethical principles” published by the leader of the research study. The results of the analysis further intensify serious ethical concerns about the conduct of this study.
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  23.  4
    Pure Altruistic Gift and the Ethics of Transplant Medicine.Paweł Łuków - 2020 - Journal of Bioethical Inquiry 17 (1):95-107.
    The article argues that altruistic giving based on anonymity, which is expected to promote social solidarity and block trade in human body parts, is conceptually defective and practically unproductive. It needs to be replaced by a more adequate notion which responds to the human practices of giving and receiving. The argument starts with identification of the main characteristics of the anonymous altruistic donation: social separation of the organ donor from the recipient, their mutual replaceability, non-obligatoriness of donation, and non-obligatoriness of (...)
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