Journal of Bioethical Enquiry

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Pharmaceutical Ethics and Grassroots Activism in the United States: A Social History Perspective

Thu, 2020-01-16 22:00
AbstractWomen ’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 of commercially-funded groups now dominate the advocacy landscape. As phar ma funding became normalized, concerns arose regarding a) the lack of transparency and public accountability regarding funding, b) the distortion of groups’ agendas, and c) the abilit...
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The Consent Form in the Chinese CRISPR Study: In Search of Ethical Gene  Editing

Thu, 2020-01-02 22:00
AbstractThis 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. (Source: Journal of Bioethical Inquiry)
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Beyond Mendelian Genetics: Anticipatory Biomedical Ethics and Policy Implications for the Use of CRISPR Together with Gene Drive in Humans

Thu, 2020-01-02 22:00
AbstractClustered regularly interspaced short palindromic repeats (CRISPR) 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 CRISPR mediated alterations to genes that allow them to be passed on to subsequent populations at rates that approach one hundred per cent transmission. Therefore, from an anticipatory biomedical ethics perspective, it is possible to conceive...
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A Response to “Fragile Objects”

Sun, 2019-12-29 22:00
AbstractThis is a critical response to “Fragile objects: A visual essay,” by Chapman et al. published in theJournal of Bioethical Inquiry (2019, 16(2): 185-189). Whilst “Fragile objects” is evocative of the author(s)’ experience in sitting with a man (“Patrick”), 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. (Source: Journal of Bioethical Inquiry)
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