The American journal of bioethics : AJOB最新文献

{"title":"Theorizing the Meaning of Health in Abortion Law.","authors":"Timothy F Murphy","doi":"10.1080/15265161.2022.2089272","DOIUrl":"https://doi.org/10.1080/15265161.2022.2089272","url":null,"abstract":"means actively pursuing opportunities to talk to others about their beliefs, to find ways to trust members of epistemic cliques that you do not identify with, and to share information with them and to process the information they share with you. Finally, their models provide a warning—to watch out for propagandists who aim to misinform while simulating the methods of an epistemic community, rather than to participate in deliberation about difficult concepts in good faith. That is, beware of the moments when incredulous claims are made that sound compelling enough, that invite belief and seem novel, but that, with a moment of skepticism seem incredible. Beware the jackalopes and when you hear storytellers yarn about them, speak up so that others see you modeling legitimate inquiry to the best of your abilities. Over time, we may connect enough clumpy networks that we shift the dynamic from polarization and conformity to deliberation and agreement.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"77-79"},"PeriodicalIF":13.4,"publicationDate":"2022-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40663773","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":"Alzheimer's Disease and the Invisible Person: The Missing Patient Voice.","authors":"Garson Leder, Arthur R Derse","doi":"10.1080/15265161.2022.2075964","DOIUrl":"https://doi.org/10.1080/15265161.2022.2075964","url":null,"abstract":"sow distrust than to facilitate good care. The ethicist, then, should help the requestor appreciate the conditions that led to Benjamin’s sad arrival in the ED. Seeing these conditions differently will help identify whom to consult. The ethicist can offer to assist, if needed, once more information is gathered. Benjamin, Trudy, and Gavon are refugees in search of help. They’re like Ukranians wandering through Poland’s forests, central Americans braving our hostile southern border, or the unnamed woman who set her infant in a small papyrus boat amongst the reeds of the Nile riverbank in hope that her infant son would be cared for, not killed, by the Pharaoh. All were suffering because they lived in systems that created difficult conditions and forced desperate choices. It is no wonder that Benjamin arrived in the ED. This case is not about Gavon or his desperate cry for help. It’s about us. This is a case about our duty to help Benjamin and his caregivers restore their home into a caring place or, perhaps, find him a new home where he can be cared for. It’s a case that calls upon our humanity, compassion, and humility to help those in need.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"87-90"},"PeriodicalIF":13.4,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40322773","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":"Protecting Privacy While Optimizing the Use of (Health)Data: The Importance of Measures and Safeguards.","authors":"Julie-Anne R Smit, Menno Mostert, Johannes J M van Delden","doi":"10.1080/15265161.2022.2075973","DOIUrl":"https://doi.org/10.1080/15265161.2022.2075973","url":null,"abstract":"The possibilities for collecting, storing, and processing of (personal) data have increased significantly over the last decades. It has been argued that an increasing demand for health data will define the future of health research (Ballantyne and Schaefer 2020). But despite the many benefits, at the same time, people are apprehensive about the loss of control, security risks and potential misuse of their data (Street et al. 2021). This has sparked a lively debate among scholars, politicians, policy makers and the public, about the significance of privacy protection and how to cope with the implications of a digitalized world. According to Pyrrho, Cambraia, and de Vasconcelos, the privacy-debate is overly framed as a battle between the individual interest and the collective interest, which in their opinion is too simplistic. Since governments have the power to prevent data from being used for discriminatory or unfair purposes, the authors refer to regulatory proposals as “the best solution available” (Pyrrho, Cambraia, and de Vasconcelos 2022). What they do not recognize is that the European legislator has been working on this solution for decades. The right to privacy (in European law referred to as the right to respect for private life) as well as the right to personal data protection have been acknowledged as fundamental rights and have been adopted into European legislation. Both rights aim to protect similar values. They strive to provide individuals with a personal sphere in which they can think freely and shape their opinions (European Union Agency for Fundamental Rights and Council of Europe 2018). Nevertheless, the two rights possess different characteristics and should be regarded as separate rights. The “classic” right to respect for private life was originally intended as a negative right, which prohibits interference of public authorities with the private lives of individuals. However, the more “modern” right to data protection is formulated as a predominantly positive obligation, which requires the EU and its Member States to take affirmative measures for the protection of personal data (Mostert et al., 2018). In recent years, the European legislator has been trying to adopt legislation equipped for a world in which digital technology has become a central part of people’s lives. This has resulted in a modernized version of Convention 108 for the protection of individuals with regard to the processing of personal data, and the introduction of—inter alia—the General Data Protection Regulation (GDPR). The recently proposed Artificial Intelligence Act (AI Act) and the proposed Data Governance Act will complement the landscape of EU legal acts. All of these (proposed) acts contain provisions safeguarding the right to respect for private life and the right to personal data protection. European data protection legislation is built around several key principles. It requires that the processing of data is lawful, fair, and transparent. In ad","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"79-81"},"PeriodicalIF":13.4,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40322784","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":"How to Use AI Ethically for Ethical Decision-Making.","authors":"Joanna Demaree-Cotton, Brian D Earp, Julian Savulescu","doi":"10.1080/15265161.2022.2075968","DOIUrl":"https://doi.org/10.1080/15265161.2022.2075968","url":null,"abstract":"1. Accuracy: The decision is the right one, where the “right” decision is that which best aligns with relevant justifying values, principles and their respective weights as they apply to the case at hand. 2. Transparency: The patients are provided with an explanation of the decision in terms of relevant values, principles and how they are weighed. In other words, the patients are offered reasons that explain and justify the decision.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"1-3"},"PeriodicalIF":13.4,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40322790","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 Protection From Risk-to-Self Causes Harm: A Brief Analysis of Restraint Use to Prevent Elopement.","authors":"Chelsey Patten, Benjamin Chaucer","doi":"10.1080/15265161.2022.2075978","DOIUrl":"https://doi.org/10.1080/15265161.2022.2075978","url":null,"abstract":"gated to make the same decisions that June would make if June had full capacity. If it is practical for Tasha to execute June’s wishes, she should do so. But, if June’s wishes regarding this particular situation are unclear, ambiguous, or unreasonably dangerous, then Tasha must make decisions that maximize June’s overall best interest. In general, patients are permitted to make unwise or risky decisions for themselves, but surrogates are not afforded the same privilege. Surrogates have an additional obligation to also minimize unreasonable, avoidable risks. The use of either physical or chemical restraints on a patient contemplating leaving the hospital against medical advice can be ethically justified. But the restraints must be emergently necessary, or consented to by the patient, or, if she is deemed to lack decision-making capacity, a surrogate, such as Tasha. Also, the restraint use must be medically necessary to achieve a legitimate clinical goal. Finally, the restraints must be the least liberty-restricting means of achieving the goal. Application of chemical or physical restraints merely for convenience or threatening the deployment of restraints to coerce compliance are ethically problematic. Is the application of chemical restraints to prevent June from leaving the hospital against medical advice ethically justifiable? It depends. FUNDING","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"97-100"},"PeriodicalIF":13.4,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40322775","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":"Healthcare Organizations Should Be Accountable Stewards of Patient Data.","authors":"Kenneth A Berkowitz","doi":"10.1080/15265161.2022.2075974","DOIUrl":"https://doi.org/10.1080/15265161.2022.2075974","url":null,"abstract":"","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"73-75"},"PeriodicalIF":13.4,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40322774","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":"Privacy and the Genetic Community.","authors":"Marisa A Leib-Neri, Anya E R Prince","doi":"10.1080/15265161.2022.2075972","DOIUrl":"https://doi.org/10.1080/15265161.2022.2075972","url":null,"abstract":"Aaronson, S. 2013. Quantum computing since democritus. Cambridge: Cambridge University Press. Bedeker, A., M. Nichols, T. Allie, T. Tamuhla, P. van Heusden, O. Olorunsogbon, and N. Tiffin. 2022. A framework for the promotion of ethical benefit sharing in health research. BMJ Global Health 7 (2):e008096. doi:10. 1136/bmjgh-2021-008096. Ferryman, K., and M. Pitcan. 2018. Fairness in precision medicine. New York: Data & Society. Kostick-Quenet, K.,. K. D. Mandl, T. Minssen, I. G. Cohen, U. Gasser, I. Kohane, and A. L. McGuire. 2022. How NFTs could transform health information exchange. 375 (6580):500–2. doi:10.1126/science.abm2004. Nash, J. C. 2004. From lavender to purple: Privacy, black women, and feminist legal theory. Cardozo Women’s Law Journal 11:303. Nissenbaum, H. 2004. Privacy as contextual integrity. Washington Law Review 79:41. Perrier, E. 2021. Ethical quantum computing: A roadmap. arXiv:2102.00759 [quant-ph]. Pyrrho, M., L. Cambraia, and V. F. de Vasconcelos. 2022. Privacy and health practices in the digital age. The American Journal of Bioethics 22 (7):50–59. doi:10.1080/ 15265161.2022.2040648. Scheibner, J., J. L. Raisaro, J. R. Troncoso-Pastoriza, M. Ienca, J. Fellay, E. Vayena, and J.-P. Hubaux. 2021. Revolutionizing medical data sharing using advanced privacy-enhancing technologies: Technical, legal, and ethical synthesis. Journal of Medical Internet Research 23 (2): e25120. doi:10.2196/25120. Tsosie, K. S., K. Fox, and J. M. Yracheta. 2021. Genomics data: The broken promise is to Indigenous people. Nature 591 (7851):529. doi:10.1038/d41586-021-00758-w. Wang, T., L. Antonacci-Fulton, K. Howe, H. A. Lawson, J. K. Lucas, A. M. Phillippy, A. B. Popejoy, M. Asri, C. Carson, M. J. P. Chaisson, et al. 2022. The Human Pangenome Project: A global resource to map genomic diversity. Nature 604 (7906):437–446. doi:10.1038/s41586022-04601-8.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"70-72"},"PeriodicalIF":13.4,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40322782","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":"Ethical Algorithmic Advice: Some Reasons to Pause and Think Twice.","authors":"Torbjørn Gundersen, Kristine Bærøe","doi":"10.1080/15265161.2022.2075053","DOIUrl":"https://doi.org/10.1080/15265161.2022.2075053","url":null,"abstract":"Machine learning and other forms of artificial intelligence (AI) can improve parts of clinical decision making regarding the gathering and analysis of data, the detection of disease, and the provision of treatment recommendations. The target article “ Algorithms for Ethical Decision-Making in the Clinic: A Proof of Concept ” (Meier et al. 2022) explores the less-exam-ined possibility of using this technology to provide ethical advice. The article examines the feasibility of an algorithmic advisory system for clinical ethics called METHAD, which is designed to provide recommendations to clinicians facing difficult ethical ques-tions. METHAD utilizes a form of machine learning model called fuzzy cognitive maps and is based on Beauchamp and Childress ’ four principles of biomedical ethics, namely, beneficence, non-maleficence, autonomy, and justice, and is trained on data from clinical ethics committees. The article provides an illu-minating and highly interesting exploration of how ethical principles can be operationalized into an algorithmic model, which clinicians could use as an advisory tool and even defer to for moral judgments, similar to how they might defer to people concerning ethical issues. The authors also display a sensible degree of expert humility on behalf of METHAD and are explicit about the technical and ethical challenges regarding the reliability and acceptability of the recommendations that the algorithm provides. In this commentary, we wish to draw attention to some algorithmic pertaining ethical algorithmic design and the of","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"26-28"},"PeriodicalIF":13.4,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40322777","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":"Important Design Questions for Algorithmic Ethics Consultation.","authors":"Danton Char","doi":"10.1080/15265161.2022.2075054","DOIUrl":"https://doi.org/10.1080/15265161.2022.2075054","url":null,"abstract":"Answering the design questions inherent to building and deploying machine learning tools (ML)—based on algorithms that can learn from and make predictions on large data sets without being explicitly programmed—requires explicit or implicit negotiation of ethical considerations (Char 2020). In applying ML tools to clinical ethics consultation, two important design questions, with ethical implications, stand out as needing discussion. First, why apply these tools to ethics consultation (i.e. why this target or clinical outcome?)? Second, what are likely impacts on the ethics workflow, including impacts on the professional identity of ethicists from introducing ML tools into this work?","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"38-40"},"PeriodicalIF":13.4,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40322778","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":"Implicit Fuzzy Specifications, Inferior to Explicit Balancing.","authors":"Joseph P DeMarco, Paul J Ford, Susannah L Rose","doi":"10.1080/15265161.2022.2075970","DOIUrl":"https://doi.org/10.1080/15265161.2022.2075970","url":null,"abstract":"Lukas J. Meier et al. offer the promise of a pathway for resolving clinical bioethical problems using an artificial intelligence (AI) interface (Meier et al. 2022). The ultimate goal, we assume, is to make sounder decisions that would reduce the need for the expertise currently required. The authors emphasize, such AI is not currently ready for prime time and that “...machine intelligence will inevitably be inferior to human ethicists... .” Although this proof of concept paper makes clear the plethora of choices to be made, resulting machine learning may be highly sensitive to such choices including the establishments of initial weights. Our aim is not to evaluate the various choices the authors make including selecting principlism as developed by Beauchamp and Childress (B & C) (Beauchamp 2013). Rather, we argue that the proof of concept using fuzzy specification does not accomplish the intended task and that the end goal of such technologies should be based on balancing that would provide tools to augment and error check human ethicists. In evaluating whether the AI program, METHAD, accomplishes the intended initial goal, four issues arise: (1) B & C do not advocate balancing, but instead rely on specification of their principles, as we more fully explain in (DeMarco and Ford 2006). We argue that specification is inferior to balancing. (2) The application of METHAD is an implicit use of specifications rather than B & C’s explicit specification. (3) METHAD is opaque and fuzzy in a way that fails Meier et al.’s own transparency requirement. (4) Finally, balancing is superior to the implicit specification of METHAD since it facilitates the development and teaching of sound clinical ethics decision making as tool for augmentation and error checking. In their endorsement of specification B & C describe its function: “Specification is a process of reducing the indeterminateness of abstract norms and providing them with action-guiding content” (Beauchamp and Childress 2001, 16). They endorse Henry S. Richardson argument that specification is superior to balancing. In his view, balancing is too intuitive or subjective (Richardson 1990, 298). B & C offer various examples of specification: For example: “‘Follow a patient’s advance directive whenever it is clear and relevant’” (Beauchamp and Childress 2001, 39). And: “It is morally prohibited to disrespect a parental refusal of treatment, unless the refusal constitutes child abuse, child neglect, or violates a right of the child” (270) [footnote, please see the balancing article for a more detail examination of Richardson’s position and B & C’s specification.] Notice that by definition, specification does not balance principles; instead it reduces their indeterminateness. Once reduced, the principles do no additional work. As Richardson points out, specifications are based on sustained argumentation, which may properly rely on balancing. (Richardson, 1990, 305–308) However, once the moral universe is popu","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"21-23"},"PeriodicalIF":13.4,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40322781","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}