The American journal of bioethics : AJOB最新文献

{"title":"Enriching the Theory and Practice of Trauma Informed Ethics Consultation.","authors":"Elizabeth Lanphier, Uchenna E Anani","doi":"10.1080/15265161.2022.2110991","DOIUrl":"https://doi.org/10.1080/15265161.2022.2110991","url":null,"abstract":"We are grateful for the excellent and incisive commentaries on our paper “Trauma Informed Ethics Consultation” (Lanphier and Anani 2022). It is heartening to see most commentators agree with why clinical ethics consultation should be trauma informed, and rightly raise relevant complexities for trauma informed ethics consultation (TIEC) that allow us to clarify and build upon our argument. Many responses introduce questions of how to achieve TIEC as well as how TIEC can support social justice, improved outcomes, and health equity in a variety of settings. Through our research, we recognize that the theoretical objectives of both ethics consultation and trauma informed care (TIC) can be challenging to translate into concrete practice. To some extent, this is due to the idiosyncratic nature of the situations and stories that contribute to both trauma histories, and ethical dilemmas, as well as the diverse responses by individuals and groups to trauma and ethics consultation. Although each ethical dilemma or trauma history is unique, they can align with recognizable patterns requiring a set of core competencies, knowledges, and skills designed to appropriately approach each novel iteration. Thus, we have frameworks like the American Society for Bioethics Core Competencies for Clinical Ethics Consultation (2011), and the Substance Abuse and Mental Health Services Administration’s “Four Rs” and “Six Principles” of TIC (SAMHSA 2014). We draw from these and other frameworks to show not only the complementarity of trauma informed care in ethics consultation, but also its necessity. The next step is translating these frameworks, competencies, or principles into action. In our target article, we began to sketch how TIC could be implemented into ethics consultation using a case in the NICU, but by no means believe that it ought to be limited to neonatal, or even pediatric healthcare. Thankfully, many of our commentators further developed approaches from their specific areas of expertise.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"W7-W9"},"PeriodicalIF":13.4,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40701003","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":"\"Involuntary (Moral) Bioenhancement\" Can Add Value to the Debate on Human Germline Genome Editing.","authors":"Vojin Rakić","doi":"10.1080/15265161.2022.2105427","DOIUrl":"https://doi.org/10.1080/15265161.2022.2105427","url":null,"abstract":"Sparrow is absolutely correct when he claims we need a better understanding of counterfactuals, yet he ultimately draws the wrong conclusion. Competing metaphysical theories mean we do not have a universally agreed account of counterfactuals and identity across possible worlds. The different theoretical underpinnings we might choose from mean we are not in a position to absolutely and definitively claim that it is impossible to harm or benefit an individual through these pre-conceptual genetic choices and actions. Given such under-determination of theory, the entire debate needs to be refocused, rather than allow our ethical assessment to be governed by an entirely contestable position on metaphysics.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"54-56"},"PeriodicalIF":13.4,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33447536","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":"What Are the Wider Implications of Sparrow's Benefit Argument?","authors":"David Wasserman","doi":"10.1080/15265161.2022.2105433","DOIUrl":"https://doi.org/10.1080/15265161.2022.2105433","url":null,"abstract":"Smolenski. 2015. Don’t edit the human germ line. Nature, 519 (7544):410–11. Parfit, D. 1984. Reasons and persons. Oxford: Clarendon Press. Ridgeway, S. 2002. I’m happy my child is deaf (interview by Merope Mills, April 9, 2002). The Guardian, April 9, 2002. https://www.theguardian.com/science/2002/apr/09/ genetics.theguardianwomenspages. Accessed 31 July 2022. Savulescu, J. 2001. Procreative beneficence: Why we should select the best children. Bioethics 15 (5–6):413–26. Savulescu, J. 2002. Deaf lesbians, “designer disability”, and the future of medicine. British Medical Journal 325 (7367):771–3. Savulescu, J., M. Hemsley, A. Newson, and B. Foddy. 2006. Behavioural genetics: Why eugenic selection is preferable to enhancement. Journal of Applied Philosophy 23 (2): 157–71. doi:10.1111/j.1468-5930.2006.00336.x. Savulescu, J., and P. Singer. 2019. An ethical pathway for gene editing. Bioethics 33 (2):221–2. Savulescu, J., M. Labude, C. Barcellona, Z. Huang, M. K. Leverentz, V. Xafis, and T. Lysaght. 2022. Two kinds of embryo research: Four case examples. Journal of Medical Ethics. doi:10.1136/medethics-2021-108038. Sparrow, R. 2022. Human germline genome editing: On the nature of our reasons to genome edit. The American Journal of Bioethics 22 (9):4–15. doi: 10.1080/15265161. 2021.1907480.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"28-30"},"PeriodicalIF":13.4,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33447544","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 Person-Affecting/Identity-Affecting Distinction between Forms of Human Germline Genome Editing Is Useless in Practical Ethics.","authors":"Benjamin Gregg","doi":"10.1080/15265161.2022.2105423","DOIUrl":"https://doi.org/10.1080/15265161.2022.2105423","url":null,"abstract":"and transgenerational epigenetic inheritance. Bioethics 34 (1):7–15. doi:10.1111/bioe.12606. Opstal, E., and S. Bordenstein. 2015. Rethinking heritability of the microbiome. Science 349 (6253):1172–3. doi:10. 1126/science.aab3958. Qin, J., R. Li, J. Raes, M. Arumugam, K. S. Burgdorf, C. Manichanh, T. Nielsen, N. Pons, F. Levenez, T. Yamada, et al. 2010. A human gut microbial gene catalogue established by metagenomic sequencing. Nature 464 (7285):59–65. Sober, E. 2012. The meaning of genetic causation. In From chance to choice, by. A. Buchannan, D. Brock, N. Daniels, and D. Wikler, Cambridge: Cambridge University Press, 347–70. Sparrow, R. 2022. Human germline genome editing: On the nature of our reasons to genome edit. The American Journal of Bioethics 22 (9):4–15. doi: 10.1080/15265161. 2021.1907480. van Kampen, S. J., and E. van Rooij. 2021. CRISPR base editing lowers cholesterol in monkeys. Nature Biotechnology 39 (8):920–2. doi:10.1038/s41587-021-00975-8. Woese, C. 1998. A manifesto for microbial genomics. Current Biology 8 (22):R780–783. doi:10.1016/S09609822(07)00498-8.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"49-51"},"PeriodicalIF":13.4,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33447546","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":"Theoretical vs Practical Reasons: Derek Parfit and Bioethics.","authors":"J S Blumenthal-Barby","doi":"10.1080/15265161.2022.2107357","DOIUrl":"https://doi.org/10.1080/15265161.2022.2107357","url":null,"abstract":"In his paper, “Human Germline Genome Editing: On the Nature of Our Reasons to Genome Edit,” Rob Sparrow argues that “genome editing is highly unlikely to be person affecting for the foreseeable future and, as a result, will, on the Parfitian account, neither benefit nor harm edited individuals” (Sparrow 2022, 4). What is striking about this claim is that, if true, it means that we will need to find some other way (other than beneficence and person-affecting reasoning) to explain why genome editing is wrong when it is wrong. One of the common explanations for its moral wrongness (or rightness) will be taken off the table, so to speak. While at first glance, this view may seem extremely revisionary to genome editing debates (since apparently, claims of benefit/harm to particular embryos and the individuals they become is a common mode of argument in genome editing ethics), there are at least two reasons why the view is not so revisionary First, there are other reasons that we can appeal to in explaining why genome editing is wrong when it is. Indeed, Sparrow tips his hat to one of them—new genome editing techniques (e.g., nuclear transfer) would involve cloning living or deceased human beings. As another example, Parfit himself was prepared to say that despite the sticky “non-identity problem,” there are ways to explain why certain reproductive decisions are wrong when they are wrong. Consider his famous example of “a young girl’s child.” Here, a 14-year-old girl “decides” to have a child, and because she is so young, gives the child a bad start at life. On the one hand, we are inclined to say that the decision was “wrong” and that it “wronged” the child that she had at such a young age. However, the Nonidentity Problem gives us pause and does not allow us to say this, for had she had a child at a later date, the child would have been a different child. Thus, how can we say that she wronged the child that she did have when the alternative would have been the child not existing at all (surely worse for the child). Parfit’s take is that there actually is a way for us to say that the girl made a morally wrong choice. He writes, “It would have been better if this man’s mother had waited. But this is not because of what she did to her actual child. It is because of what she could have done for any child that she could have had when she was mature. The objection must be that, if she had waited, she could have given to some other child a better start in life” (Reasons and Persons, 364–365). Thus, even when we take personaffecting arguments off the table, there are still other ways to explain why certain reproductive choices (such as those involved in certain instances of genome editing) are wrong. There is a second reason why Sparrow’s view is not so revisionary or shattering to genome editing debates. This reason is found buried deep in Parfit’s concluding remarks in Reasons and Persons and it is very interesting. Parfit writes,","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"1-3"},"PeriodicalIF":13.4,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33447548","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":"Response to Open Peer Commentaries on Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases.","authors":"Charles Dupras, Eline M Bunnik","doi":"10.1080/15265161.2022.2105436","DOIUrl":"https://doi.org/10.1080/15265161.2022.2105436","url":null,"abstract":"In ‘Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases’ (Dupras and Bunnik 2021), we argued against the assessment of privacy risks and protection requirements based on broad biological data types. More specifically, we questioned the assumption that genomic data generally deserves greater caution than other omic data types. Rather, we argued, it is the presence or absence of privacy-relevant data properties—and their specific combination—that affect the level of risk and call for more or less elaborate privacy protection strategies. Privacy-relevant properties are not unique to genomic data; many are shared across various data types (cf. epigenomics, microbiomics, transcriptomics, proteomics, lipidomics, metabolomics, neuromics, phenomics, exposomics). Following an analysis of the similarities and dissimilarities between genomic and epigenomic data, we identified ten properties that may increase risk of reidentification using the data and/or the level of sensitivity of the information potentially conveyed by it. We also identified two potential interaction effects between data types (synergetic and correlative effects) that may further increase privacy risks. We then proposed the backbone of a framework for the assessment of privacy risks in the current time of unprecedented biological data diversification and integration. We are grateful to everyone who read and wrote commentaries in response to our proposal. These contributions rightfully highlight some of the limitations of our approach. Here, we expand on three important observations made by the commentators in relation to: (1) our focus on privacy as information concealment; (2) the difficulty of distinguishing intrinsic and extrinsic factors influencing privacy risks; and (3) the possibility that our framework may still be too exceptionalist. DIGNITY, PRIVACY AND CONFIDENTIALITY RISKS","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"W4-W6"},"PeriodicalIF":13.4,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40596620","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":"Human Genome Editing and Identity: The Precariousness of Existence and the Abundance of Argumentative Options.","authors":"Inmaculada de Melo-Martín","doi":"10.1080/15265161.2022.2105437","DOIUrl":"https://doi.org/10.1080/15265161.2022.2105437","url":null,"abstract":"Baylis, F. 2019. Altered inheritance: CRISPR and the ethics of human genome editing. Cambridge, MA: Harvard University Press. Boonin, D. 2014. The non-identity problem and the ethics of future people. Oxford, UK: Oxford University Press. Botkin, J. R. 2020. The case for banning heritable genome editing. Genetics in Medicine 22 (3):487–9. doi:10.1038/ s41436-019-0696-6. Cwik, B. 2020. Responsible translational pathways for germline gene editing? Current Stem Cell Reports 6 (4):126–33. doi:10.1007/s40778-020-00179-x. Cwik, B. 2021. Gene editing: How can you ask whether if you don’t know how? The Hastings Center Report 51 (3): 13–7. doi:10.1002/hast.1256. Heidt-Forsythe, E. 2018. Between families and Frankenstein: The politics of egg donation in the United States. Oakland, CA: University of California Press. Lewis, D. 1986. On the plurality of worlds. Oxford, UK: Basil Blackwell. Schaefer, G. O. 2020. Can reproductive genetic manipulation save lives? Medicine, Health Care, and Philosophy 23 (3):381–6. doi:10.1007/s11019-020-09947-2. Sparrow, R. 2022. Human germline genome editing: On the nature of our reasons to genome edit. The American Journal of Bioethics 22 (9):4–15. doi: 10.1080/15265161. 2021.1907480. Steffann, J., P. Jouannet, J.-P. Bonnefont, H. Chneiweiss, and N. Frydman. 2018. Could failure in preimplantation genetic diagnosis justify editing the human embryo genome? Cell Stem Cell 22 (4):481–2. doi:10.1016/j.stem.2018.01.004. Wolf, D. P., P. A. Mitalipov, and S. M. Mitalipov. 2019. Principles of and strategies for germline gene therapy. Nature Medicine 25 (6):890–7. doi:10.1038/s41591-0190473-8.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"18-20"},"PeriodicalIF":13.4,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33447533","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":"Dynamic Aspects of Human Genetics: Is the Human Germline the Bioethical Key to Human Genetic Engineering?","authors":"Nicolae Morar","doi":"10.1080/15265161.2022.2105430","DOIUrl":"https://doi.org/10.1080/15265161.2022.2105430","url":null,"abstract":"on more difficult or controversial terrain such as: nonperson-affecting principle justifications that claim that the wrongfulness of the reproduction stems from the failure to substitute a child who would experience less suffering or more opportunity (with additional complications for different number cases); reproductive externalities focused on harm to third-parties by the existence of a particular child; a conception of wronging absent harm or a related alternative conception of harm where the fact that an individual is overall benefited is insufficient to save the act from being wrongful; or legal moralist or virtue ethics analysis about certain kinds of reproductive behaviors separate from their consequences for the offspring (Cohen 2011, 2012b). None of these are easy for academics to explain or defend, let alone for policymakers in this area, hence the continued allure of person-affecting arguments.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"46-49"},"PeriodicalIF":13.4,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33447543","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":"Reasons to Genome Edit and Metaphysical Essentialism about Human Identity.","authors":"Tomasz Żuradzki, Vilius Dranseika","doi":"10.1080/15265161.2022.2105431","DOIUrl":"https://doi.org/10.1080/15265161.2022.2105431","url":null,"abstract":"The standard view in bioethics distinguishes between “person affecting” interventions that may harm or benefit particular individuals (e.g., by genome editing) and “identity affecting” interventions that determine which individual comes into existence (e.g., by genetic selection). Sparrow questions one of the central assumptions of the debates about reproductive technologies in the past several decades. He argues that direct genetic modification of human embryos should be classified not as “person affecting” but as “identity affecting” because any genome editing in the foreseeable future “will almost certainly” involve creating and editing multiple embryos, as well as selecting the “best possible” embryo by preimplantation genetic diagnosis. Sparrow also assumes that the distinction between “person affecting” and “identity affecting” interventions has crucial ethical significance: “the reasons we have to select embryos are weaker than the reasons we have to modify them” (Sparrow 2022). Thus, classifying genome editing as an “identity affecting” intervention, he concludes that there is no justification for laws requiring enhancement, even if one assumes that enhancement is morally obligatory. In this commentary paper, we are taking one step further in questioning the central assumptions in the bioethical debates about reproductive technologies. We argue that the very distinction between “person affecting” and “identity affecting” interventions is based on a questionable form of material-origin essentialism. Questioning of this form of essentialist approach to human identity allows treating genome editing and genetic selection as more similar than they are taken to be in the standard approaches. It would also challenge the idea that normative reasons we have in these two types of cases markedly differ in strength.","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"34-36"},"PeriodicalIF":13.4,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"33447547","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":"Pathways to Drug Liberalization: Racial Justice, Public Health, and Human Rights.","authors":"Jonathan Lewis, Brian D Earp, Carl L Hart","doi":"10.1080/15265161.2021.1940370","DOIUrl":"https://doi.org/10.1080/15265161.2021.1940370","url":null,"abstract":"In our recent article, together with more than 60 of our colleagues, we outlined a proposal for drug policy reform consisting of four specific yet interrelated strategies: (1) de jure decriminalization of all psychoactive substances currently deemed illicit for personal use or possession (so-called “recreational” drugs), accompanied by harm reduction policies and initiatives akin to the Portugal model; (2) expunging criminal convictions for nonviolent offenses pertaining to the use or possession of small quantities of such drugs (and releasing those serving time for these offenses), while delivering retroactive ameliorative relief; (3) the ultimate legalization and careful regulation of currently illicit drugs; and (4) the delivery of a new “Marshall Plan” focused on community-building initiatives, expanded harm reduction programs, and social and health care support efforts (Earp et al. 2021). We were gratified to see so many thoughtful commentaries on our proposal, and we respond to them in part in this reply. As noted within these commentaries, we explicitly defend strategies (1), (2), and (4) on the grounds of racial justice. Specifically, we argue that such strategies are needed to combat the harmful effects of prohibition and the practices of discrimination that continue to disproportionately affect individuals and communities of color, especially Black and Hispanic men and those who care for them or depend on them for care. However, questions arise as to whether the third strategy (i.e., legalization and regulation) is required to deal with the deep-seated racial injustices associated with current drug laws. In our article, we argued that illicit drug markets generate specific harms, and in conjunction with current drug laws contribute to the stigmatization of drug use and drug users. Insofar as these markets and associated stigmatization disproportionately affect or disempower—or contribute to the mistreatment of— individuals in certain racialized groups, then addressing them is a matter of racial justice. And if decriminalization and harm reduction efforts alone cannot remove the harms associated with illicit markets—nor adequately deal with these stigmatizing attitudes— then full legalization with regulation may be required. Similarly, if the existence of civil penalties for drug-related misdemeanors not captured by de jure decriminalization policies is used as a pretext for racial discrimination, then a case can be made for legalization/regulation along racial justice lines. The same claim could also be made if racialized groups were found to be disproportionately impaired from accessing supportive services afforded by decriminalization that would otherwise be more freely available under a regulated regime. We do not make such a case in the associated article. Yet, as Dineen and Pendo (2021) demonstrate in their commentary on the mistreatment of people with substance use disorders in health care, there is evidence to support such a case","PeriodicalId":145777,"journal":{"name":"The American journal of bioethics : AJOB","volume":" ","pages":"W10-W12"},"PeriodicalIF":13.4,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/15265161.2021.1940370","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39121495","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}