The American journal of bioethics : AJOB最新文献

{"title":"Sharing Decisions When Withdrawing a Technology Is Not the Same as Withholding It.","authors":"Danton Char, Dana Gal, Seth Hollander","doi":"10.1080/15265161.2022.2123976","DOIUrl":"https://doi.org/10.1080/15265161.2022.2123976","url":null,"abstract":"00001396. Kukora, S. K., and R. D. Boss. 2018. Values-based shared decision-making in the antenatal period. Seminars in Fetal & Neonatal Medicine 23 (1):17–24. doi:10.1016/j. siny.2017.09.003. Meadow, W., X. Meadow, R. R. Tanz, J. Lagatta, and J. Lantos. 2011. The value of a trial of therapy–football as a “proof-of-concept.” Acta Paediatrica 100 (2):167–9. doi: 10.1111/j.1651-2227.2010.02113.x. Roscigno, C. I., T. A. Savage, K. Kavanaugh, T. T. Moro, S. J. Kilpatrick, H. T. Strassner, W. A. Grobman, and R. E. Kimura. 2012. Divergent views of hope influencing communications between parents and hospital providers. Qualitative Health Research 22 (9):1232–46. doi:10.1177/ 1049732312449210. Rysavy, M. A., L. Li, E. F. Bell, A. Das, S. R. Hintz, B. J. Stoll, B. R. Vohr, W. A. Carlo, S. Shankaran, M. C. Walsh, et al. 2015. Between-hospital variation in treatment and outcomes in extremely preterm infants. The New England Journal of Medicine 372 (19):1801–11. doi: 10.1056/NEJMoa1410689. Saigal, S.,. B. Stoskopf, J. Pinelli, D. Streiner, L. Hoult, N. Paneth, and J. Goddeeris. 2006. Self-perceived healthrelated quality of life of former extremely low birth weight infants at young adulthood. Pediatrics 118 (3): 1140–8. doi:10.1542/peds.2006-0119. Syltern, J., L. Ursin, B. Solberg, and R. Støen. 2022. Postponed withholding: Balanced decision-making at the margins of viability. The American Journal of Bioethics 22 (11):15–26. doi:10.1080/15265161.2021.1925777. Tyson, J. E., N. A. Parikh, J. Langer, C. Green, and R. D. Higgins. 2008. Intensive care for extreme prematurity–moving beyond gestational age. The New England Journal of Medicine 358 (16):1672–81. doi:10. 1056/NEJMoa073059. Zupancic, J. A. F., H. Kirpalani, J. Barrett, S. Stewart, A. Gafni, D. Streiner, M. L. Beecroft, and P. Smith. 2002. Characterising doctor-parent communication in counselling for impending preterm delivery. Archives of Disease in Childhood-Fetal and Neonatal Edition 87 (2):F113–117.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"69-72"},"PeriodicalIF":13.4,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40665013","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"To Disclose or Not to Disclose: Secondary Findings of XXY Chromosomes.","authors":"Benjamin S Wilfond, Devan M Duenas, Liza-Marie Johnson","doi":"10.1080/15265161.2022.2110982","DOIUrl":"https://doi.org/10.1080/15265161.2022.2110982","url":null,"abstract":"","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"87-88"},"PeriodicalIF":13.4,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40380422","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Against Externalism: Maintaining Patient Autonomy and the Right to Refuse Medical Treatment.","authors":"Megan S Wright","doi":"10.1080/15265161.2022.2110985","DOIUrl":"https://doi.org/10.1080/15265161.2022.2110985","url":null,"abstract":"Introduction: A “paradigm shift” in mental health care. In Mental health, legal capacity, and human rights, ed. M. A. Stein, F. Mahomed, V. Patel, and C. Sunkel, 1–16. Cambridge, UK: Cambridge University Press. McCarthy, A. M., and D. Howard. 2021. Supported decisionmaking: Non-domination rather than mental prosthesis. The American Journal of Bioethics Neuroscience 1–11. Online ahead of print. doi: 10.1080/21507740.2021.1973147. Pickering, N., G. Newton-Howes, and G. Young. 2022. Harmful choices, the case of C, and decision-making competence. The American Journal of Bioethics 22 (10): 38–50. doi:10.1080/15265161.2021.1941422. Silvers, A., and L. P. Francis. 2009. Thinking about the good: Reconfiguring liberal metaphysics (or not) for people with cognitive disabilities. Metaphilosophy 40 (3–4): 475–98. doi: 10.1111/j.1467-9973.2009.01602.x. Stein, M. A., P. J. S. Stein, and P. Blanck. 2009. Disability. In Oxford international encyclopedia of legal history, ed. Stanley N. Katz, Vol. 2, 334. Oxford: Oxford University Press.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"58-60"},"PeriodicalIF":13.4,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40380430","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"An Externalist, Process-Based Approach to Supported Decision-Making.","authors":"Leslie P Francis, Barbara E Bierer, Michael Ashley Stein","doi":"10.1080/15265161.2022.2110979","DOIUrl":"https://doi.org/10.1080/15265161.2022.2110979","url":null,"abstract":"of avoiding the death and disability that will result from the risky choice rather than the converse. And the courts remain the ultimate arbiter of whether the degree of capacity being required is reasonable in light of the choice being made. We note that a corollary of this approach is that less stringent levels of capacity will be required for inherently less risky choices, such as the decision to accept an intervention that is likely to carry little risk and to offer clear benefit. As an example, the American Psychiatric Association has supported a less stringent test of decision-making competence when a person with a mental illness is deciding to enter a hospital voluntarily for psychiatric treatment, an action that (assuming psychiatric concurrence) is highly likely to be beneficial (APA 1992). Finally, although not directly relevant to Pickering and colleagues’ argument, we cannot help but note that the judgment in C’s case that found her competent appears to have overlooked a serious deficiency in her ability to appreciate (or “weigh” in British terms) the nature of her situation. The information she received, though it may have been conveyed with varying degrees of optimism, seemed to have consistently emphasized the probabilistic nature of the possible outcomes of dialysis. It was certain neither that she would regain kidney function nor that she would not. The uncertainty of the outcome was precisely what she seemed unable to grasp, raising serious questions about her decisional competence, regardless of the degree of capacity required. DISCLOSURE STATEMENT","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"55-58"},"PeriodicalIF":13.4,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40380437","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Importance of Defining Actionability as Related to Disclosure of Secondary Findings Identified in Research.","authors":"Jordan Brown, Dana Howard","doi":"10.1080/15265161.2022.2110976","DOIUrl":"https://doi.org/10.1080/15265161.2022.2110976","url":null,"abstract":"health may be discovered (though the consent form specifically mentioned “urgent” health concerns, and the medical urgency of this finding is admittedly somewhat borderline). Available evidence does not suggest that the results would likely be emotionally distressing, and it is in fact likely that they would be helpful—clinically or otherwise. On the basis of the above considerations, we would recommend that the research team confirm the diagnosis and disclose it to Mr. Robinson. While doing so is not ethically obligatory, given the stakes, there is still good ethical reason to disclose the diagnosis. In the context of lack of widespread accurate information about Klinefelter’s syndrome and to minimize potential psychosocial harm, if the team decides to disclose the finding it should be disclosed by a genetic counselor or other professional who has experience working with patients with Klinefelter’s syndrome. Knowing when to disclose incidental research findings that have only borderline actionability can be difficult. Our approach in this case—and one that we think appropriate for borderline incidental findings more generally—involved examining the relevant literature to identify likely risks and benefits of disclosing the finding and then considering how those might affect the individual in question, given available information about that particular participant. Where validity and volition appear to be present, and the value of disclosing the findings is not overshadowed by likely harms, we tend to favor disclosing even borderline incidental findings. REFERENCES","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"93-95"},"PeriodicalIF":13.4,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40380438","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Advice on Vaping in the Face of Empirical and Ethical Uncertainty.","authors":"Kalle Grill","doi":"10.1080/15265161.2022.2110972","DOIUrl":"https://doi.org/10.1080/15265161.2022.2110972","url":null,"abstract":"Brandt, A. M. 2009. The cigarette century: The rise, fall, and deadly persistence of the product that defined America. New York: Basic Books. Burris, S. C., M. L. Berman, M. S. Penn, and T. R. Holiday. 2018. The new public health law: A transdisciplinary approach to practice and advocacy. Oxford: Oxford University Press. Dawson, A., M. Verweij, and M. F. Verweij, eds. 2007. Ethics, prevention, and public health. Oxford: Oxford University Press. Fairchild, A., and J. Colgrove. 2004. Out of the ashes: The life, death, and rebirth of the “safer” cigarette in the United States. American Journal of Public Health 94 (2): 192–204. doi:10.2105/ajph.94.2.192. Goldberg, D. S. 2012. Against the very idea of the politicization of public health policy. American Journal of Public Health 102 (1):44–9. doi:10.2105/AJPH.2011.300325. Goldberg, D. S. 2013. Mild traumatic brain injury, the National Football League, and the manufacture of doubt: An ethical, legal, and historical analysis. The Journal of Legal Medicine 34 (2):157–91. doi:10.1080/01947648.2013. 800792. Kinney, E. D. 2002. Administrative law and the public’s health. The Journal of Law, Medicine & Ethics 30 (2): 212–23. doi:10.1111/j.1748-720x.2002.tb00388.x. Michaels, D. 2008. Doubt is their product: How industry’s assault on science threatens your health. Oxford: Oxford University Press. Milov, S. 2019. The cigarette: A political history. United Kingdom: Harvard University Press. Proctor, R. N. 2011. Golden holocaust: Origins of the cigarette catastrophe and the case for abolition. Berkeley, CA: University of California Press. Svirky, L., D. Howard, and M. Berman. 2022. E-cigarettes and the multiple responsibilities of the FDA. The American Journal of Bioethics 22 (10):5–14. doi:10.1080/ 15265161.2021.1907478. Wikler, D., and D. W. Brock. 2007. Population-level bioethics: Mapping a new agenda. Ethics, Prevention, and Public Health 78–94. World Health Organization. 2022. Tobacco. https://www. who.int/news-room/fact-sheets/detail/tobacco.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"20-22"},"PeriodicalIF":13.4,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40380442","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"When Limiting Liberty, Tread Carefully: Autonomous Free Choices Should Not Be Overruled Because of the Beliefs and Values of the Decider.","authors":"Johan Christiaan Bester","doi":"10.1080/15265161.2022.2110973","DOIUrl":"https://doi.org/10.1080/15265161.2022.2110973","url":null,"abstract":"Brock, D. W. 1991. Decisionmaking competence and risk. Bioethics 5 (2):105–12. doi:10.1111/j.1467-8519.1991.tb00151.x. Earp, B. D. 2019. The child’s right to bodily integrity. In Ethics and the contemporary world, ed. David Edmonds, 217–235. Abingdon and New York: Routledge. Pickering, N., G. Newton-Howes, and G. Young. 2022. Harmful choices, the case of C, and decision-making competence. The American Journal of Bioethics 22 (10): 38–50. doi:10.1080/15265161.2021.1941422. Savulescu, J., and R. W. Momeyer. 1997. Should informed consent be based on rational beliefs? Journal of Medical Ethics 23 (5):282–8. doi:10.1136/jme.23.5.282. Veit, W., B. D. Earp, H. Browning, and J. Savulescu. 2021. Evaluating tradeoffs between autonomy and wellbeing in supported decision making. The American Journal of Bioethics 21 (11):21–4. doi:10.1080/15265161.2021.1980134. Wicclair, M. R. 1991. Patient decision-making capacity and risk. Bioethics 5 (2):91–104. doi:10.1111/j.1467-8519.1991. tb00150.x.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"70-72"},"PeriodicalIF":13.4,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40380443","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Harmful Choices, the Case of C, and Decision-Making Competence.","authors":"Neil Pickering,&nbsp;GIles Newton-Howes,&nbsp;Greg Young","doi":"10.1080/15265161.2021.1941422","DOIUrl":"https://doi.org/10.1080/15265161.2021.1941422","url":null,"abstract":"<p><p>In this paper, we make the case that a person who is considering or has already made a decision that appears seriously harmful to that person should in some cases be judged incapable of making that decision <i>because of the harmfulness of the decision</i>. We focus on the English case of C of 2015. C refused life-saving dialysis. The hospital wanted her declared incompetent to make this decision under the English Mental Capacity Act of 2005. The Judge argued that the consequences for a person's welfare of their decision are irrelevant to the assessment of competence, a position labeled \"internalism.\" This aligns with an assessment of decision-making competence on a strictly cognitivist model. However, internalism misrepresents decision-making. The outcomes of decision-making processes should be part and parcel of judgments of decision-making competence, and in some cases are necessary for any judgment of incompetence to be made.</p>","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"38-50"},"PeriodicalIF":13.4,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/15265161.2021.1941422","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39179062","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Principle of Autonomy in Biomedical- and Neuroethics.","authors":"Barend W Florijn","doi":"10.1080/15265161.2022.2089291","DOIUrl":"https://doi.org/10.1080/15265161.2022.2089291","url":null,"abstract":"With appreciation toward those who commented and provided insight on “From reciprocity to autonomy in physician assisted death: an ethical analysis of the Dutch Supreme Court ruling in the Albert Heringa case” (Florijn 2022), I obtained an additional opportunity to clarify and advance my thinking about the concept of autonomy in biomedicaland neuroethics. In general, the ideal value of the principle of autonomy in biomedical ethics, as well as ‘in moral, political and social areas’, contains a ‘notion of the self which is to be respected, left unmanipulated, and which is, in certain ways, independent and selfdetermining’ (Dworkin 2015). In clinical settings, this ideal of self-legislation should be accessible and available to all (i.e. both physician and patient). Complementary to this approach is Immanuel Kant’s theory of autonomy that understands autonomy as a moral principle. Herein, autonomy is seeing the rational individual as a person agreeing to universal principles and as an end in itself (Genuis 2021). Autonomous acts are rational when in accordance with these principles, while laws should function as an expression of autonomy by reflecting a commitment to equality and respect (Reis-Dennis 2020). Furthermore, neurobiology pinpoints the emergence of the autonomous self and decision-making in cooperating complex systems (Bergareche and da Rocha 2011). A striking example is the ‘executive control theory’ which locates decision-making among a hierarchy of desires, analogous to neural structure, function and circuit activity, controlled by the prefrontal cortex. These neural circuits improve decisionmaking using (nonrational) information produced by emotional responses (somatic marker hypothesis), although they are still influenced ‘covertly by external sources’ outside of conscious awareness (extended mind theory) (Felsen and Reiner 2011). Given this context and the ruling of the Supreme Court, the aim of my response to the open peer commentaries is twofold. I argue the physician-patient relationship is constitutive for the principle of autonomy while EAS eligibility requirements (particularly the core eligibility concept of unbearable suffering) do not conflict with this principle of autonomy.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"W9-W11"},"PeriodicalIF":13.4,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40121839","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Limitations on the Capability of the FDA to Advise.","authors":"Leah Z Rand,&nbsp;Aaron S Kesselheim","doi":"10.1080/15265161.2022.2110978","DOIUrl":"https://doi.org/10.1080/15265161.2022.2110978","url":null,"abstract":"Svirsky, Howard, and Berman (2022) address the U.S. Food and Drug Administration (FDA)’s oversight of tobacco products, the newest major area of regulation Congress assigned to the FDA. They discuss the role of population health in decision making about tobacco products. They also conclude that the FDA plays important roles beyond simply setting basic quality standards, including as a purveyor of advice. Debates over the FDA’s focus on individual vs. population risk, and on the FDA’s role in guiding prescribing practices, have existed since the creation of the FDA over 100 years ago in the context of widespread concern relating to the US medical products market. The evolution and current status of those controversies may help provide some insight into the future of tobacco regulation.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"15-17"},"PeriodicalIF":13.4,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40380436","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}