Pub Date : 2024-06-01Epub Date: 2023-11-13DOI: 10.1007/s11673-023-10314-y
S Wallaert, S Segers
We expand on Della Croce's ambition to interpret "epistemic injustice" as a specification of non-maleficence in the use of the influential four-principle framework. This is an alluring line of thought for conceptual, moral, and heuristic reasons. Although it is commendable, Della Croce's attempt remains tentative. So does our critique of it. Yet, we take on the challenge to critically address two interrelated points. First, we broaden the analysis to include deliberations about hermeneutical injustice. We argue that, if due consideration of epistemic injustice is to require more than negative ethical obligations in medicine, dimensions of hermeneutical injustice should be explored as an avenue to arrive at such positive duties. Second, and relatedly, we argue that this may encompass moral responsibilities beyond the individual level, that is: positive obligations to take action on a structural level. Building on Dotson's concept of "contributory injustice" and Scheman's concept of "perceptual autonomy," we suggest that the virtues of testimonial and hermeneutical justice may provide additional content not only to negative prohibitions of action (i.e. non-maleficence) but also to positive requirements of action, like respecting patient autonomy.
{"title":"Putting \"Epistemic Injustice\" to Work in Bioethics: Beyond Nonmaleficence.","authors":"S Wallaert, S Segers","doi":"10.1007/s11673-023-10314-y","DOIUrl":"10.1007/s11673-023-10314-y","url":null,"abstract":"<p><p>We expand on Della Croce's ambition to interpret \"epistemic injustice\" as a specification of non-maleficence in the use of the influential four-principle framework. This is an alluring line of thought for conceptual, moral, and heuristic reasons. Although it is commendable, Della Croce's attempt remains tentative. So does our critique of it. Yet, we take on the challenge to critically address two interrelated points. First, we broaden the analysis to include deliberations about hermeneutical injustice. We argue that, if due consideration of epistemic injustice is to require more than negative ethical obligations in medicine, dimensions of hermeneutical injustice should be explored as an avenue to arrive at such positive duties. Second, and relatedly, we argue that this may encompass moral responsibilities beyond the individual level, that is: positive obligations to take action on a structural level. Building on Dotson's concept of \"contributory injustice\" and Scheman's concept of \"perceptual autonomy,\" we suggest that the virtues of testimonial and hermeneutical justice may provide additional content not only to negative prohibitions of action (i.e. non-maleficence) but also to positive requirements of action, like respecting patient autonomy.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":" ","pages":"225-228"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89720364","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-01Epub Date: 2024-01-19DOI: 10.1007/s11673-023-10313-z
Hane Htut Maung
Gender affirming hormone treatment is an important part of the care of trans adolescents which enables them to develop the secondary sexual characteristics congruent with their identified genders. There is an increasing amount of empirical evidence showing the benefits of gender affirming hormone treatment for psychological health and social well-being in this population. However, in several countries, access to gender affirming hormone treatment for trans adolescents has recently been severely restricted. While much of the opposition to gender affirming hormone treatment for trans adolescents has in part been ideologically motivated, it also reflects a debate about whether there are harms that outweigh the benefits of the treatment. Accordingly, a systematic and comprehensive philosophical analysis of the ethics of gender affirming hormone treatment for trans adolescents is needed. Herein, I offer such an analysis that draws on the four principles of biomedical ethics by Tom Beauchamp and James Childress. Based on the considerations of beneficence, nonmaleficence, autonomy, and justice, I argue that the provision of access to gender affirming hormone treatment for consenting trans adolescents is ethically required and that the current restrictions to such treatment are ethically wrong.
{"title":"Gender Affirming Hormone Treatment for Trans Adolescents: A Four Principles Analysis.","authors":"Hane Htut Maung","doi":"10.1007/s11673-023-10313-z","DOIUrl":"10.1007/s11673-023-10313-z","url":null,"abstract":"<p><p>Gender affirming hormone treatment is an important part of the care of trans adolescents which enables them to develop the secondary sexual characteristics congruent with their identified genders. There is an increasing amount of empirical evidence showing the benefits of gender affirming hormone treatment for psychological health and social well-being in this population. However, in several countries, access to gender affirming hormone treatment for trans adolescents has recently been severely restricted. While much of the opposition to gender affirming hormone treatment for trans adolescents has in part been ideologically motivated, it also reflects a debate about whether there are harms that outweigh the benefits of the treatment. Accordingly, a systematic and comprehensive philosophical analysis of the ethics of gender affirming hormone treatment for trans adolescents is needed. Herein, I offer such an analysis that draws on the four principles of biomedical ethics by Tom Beauchamp and James Childress. Based on the considerations of beneficence, nonmaleficence, autonomy, and justice, I argue that the provision of access to gender affirming hormone treatment for consenting trans adolescents is ethically required and that the current restrictions to such treatment are ethically wrong.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":" ","pages":"345-363"},"PeriodicalIF":1.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11289353/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139492734","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-27DOI: 10.1007/s11673-023-10334-8
A Anderson, M Meher, Z Maroof, S Malua, C Tahapeehi, J Littleton, V Arcus, J Wade, J Park
Tuberculosis (TB) is a potentially fatal infectious disease that, in Aotearoa New Zealand (NZ), inequitably affects Asian, Pacific, Middle Eastern, Latin American, and African (MELAA), and Māori people. Medical research involving genome sequencing of TB samples enables more nuanced understanding of disease strains and their transmission. This could inform highly specific health interventions. However, the collection and management of TB isolate samples for research are currently informed by monocultural biomedical models often lacking key ethical considerations. Drawing on a qualitative kaupapa Māori-consistent study, this paper reports on preliminary discussions with groups of Māori, Pacific, and Afghan people in NZ, whose communities have been harmed by TB and TB stigma. Participants' discussions highlight key concerns and meanings that ought to inform the development of guidelines and a more robust consultative process for the governance of how TB isolate samples are collected and used both retrospectively and in future research. We argue for ethical processes to be culturally nuanced and community-generated, flexible and meaningful, and situated in relation to the physical and symbolic effects of TB. We discuss the significance of Indigenous data sovereignty, rights, and kāwanatanga (governorship) in shaping a multicultural data sovereignty model.
{"title":"Ethical Stakes for Past, Present, and Prospective Tuberculosis Isolate Research Towards a Multicultural Data Sovereignty Model for Isolate Samples in Research.","authors":"A Anderson, M Meher, Z Maroof, S Malua, C Tahapeehi, J Littleton, V Arcus, J Wade, J Park","doi":"10.1007/s11673-023-10334-8","DOIUrl":"https://doi.org/10.1007/s11673-023-10334-8","url":null,"abstract":"<p><p>Tuberculosis (TB) is a potentially fatal infectious disease that, in Aotearoa New Zealand (NZ), inequitably affects Asian, Pacific, Middle Eastern, Latin American, and African (MELAA), and Māori people. Medical research involving genome sequencing of TB samples enables more nuanced understanding of disease strains and their transmission. This could inform highly specific health interventions. However, the collection and management of TB isolate samples for research are currently informed by monocultural biomedical models often lacking key ethical considerations. Drawing on a qualitative kaupapa Māori-consistent study, this paper reports on preliminary discussions with groups of Māori, Pacific, and Afghan people in NZ, whose communities have been harmed by TB and TB stigma. Participants' discussions highlight key concerns and meanings that ought to inform the development of guidelines and a more robust consultative process for the governance of how TB isolate samples are collected and used both retrospectively and in future research. We argue for ethical processes to be culturally nuanced and community-generated, flexible and meaningful, and situated in relation to the physical and symbolic effects of TB. We discuss the significance of Indigenous data sovereignty, rights, and kāwanatanga (governorship) in shaping a multicultural data sovereignty model.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2024-05-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141155754","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-22DOI: 10.1007/s11673-024-10353-z
Gila Svirsky
{"title":"Notes from the Rock Bottom.","authors":"Gila Svirsky","doi":"10.1007/s11673-024-10353-z","DOIUrl":"https://doi.org/10.1007/s11673-024-10353-z","url":null,"abstract":"","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2024-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141082784","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-29DOI: 10.1007/s11673-024-10335-1
Kate Harvey, Graeme Laurie
Without trust there is no credible human health research (HHR). This article accepts this truism and addresses a crucial question that arises: how can trust continually be promoted in an ever-changing and uncertain HHR environment? The article analyses long-standing mechanisms that are designed to elicit trust-such as consent, anonymization, and transparency-and argues that these are best understood as trust represented by proxies of trustworthiness, i.e., regulatory attempts to convey the trustworthiness of the HHR system and/or its actors. Often, such proxies are assumed to operate as markers that trust exists or, at least, has not been lost. But, since trust can neither be "built" nor "secured," this is a precarious assumption. Worryingly, there is no existing theoretical account of how to understand and evaluate these proxies of trustworthiness as part of a trusted HHR ecosystem. To remedy this, the paper argues for a radical reimagining of trust and trustworthiness as performative acts that ought to be understood in relation to each other and by reference to the common values at stake. It is shown that proxies of trustworthiness are the operational tools used to perform trustworthiness. It advocates for a values-based approach to understanding the relationship between trust and trustworthiness. This establishes a strong basis for an evaluative framework for proxies of trustworthiness, i.e., to determine how to perform trustworthiness well. Five common proxies in HHR are scrutinized from a values perspective. The contribution is to provide a far-reaching normative and practical framework by which existing and future proxies of trustworthiness can be identified, assessed, maintained, or replaced in rapidly changing HHR regulatory ecosystems where trust itself is crucial to the success of the entire HHR enterprise.
{"title":"Proxies of Trustworthiness: A Novel Framework to Support the Performance of Trust in Human Health Research.","authors":"Kate Harvey, Graeme Laurie","doi":"10.1007/s11673-024-10335-1","DOIUrl":"https://doi.org/10.1007/s11673-024-10335-1","url":null,"abstract":"<p><p>Without trust there is no credible human health research (HHR). This article accepts this truism and addresses a crucial question that arises: how can trust continually be promoted in an ever-changing and uncertain HHR environment? The article analyses long-standing mechanisms that are designed to elicit trust-such as consent, anonymization, and transparency-and argues that these are best understood as trust represented by proxies of trustworthiness, i.e., regulatory attempts to convey the trustworthiness of the HHR system and/or its actors. Often, such proxies are assumed to operate as markers that trust exists or, at least, has not been lost. But, since trust can neither be \"built\" nor \"secured,\" this is a precarious assumption. Worryingly, there is no existing theoretical account of how to understand and evaluate these proxies of trustworthiness as part of a trusted HHR ecosystem. To remedy this, the paper argues for a radical reimagining of trust and trustworthiness as performative acts that ought to be understood in relation to each other and by reference to the common values at stake. It is shown that proxies of trustworthiness are the operational tools used to perform trustworthiness. It advocates for a values-based approach to understanding the relationship between trust and trustworthiness. This establishes a strong basis for an evaluative framework for proxies of trustworthiness, i.e., to determine how to perform trustworthiness well. Five common proxies in HHR are scrutinized from a values perspective. The contribution is to provide a far-reaching normative and practical framework by which existing and future proxies of trustworthiness can be identified, assessed, maintained, or replaced in rapidly changing HHR regulatory ecosystems where trust itself is crucial to the success of the entire HHR enterprise.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2024-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140327346","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-29DOI: 10.1007/s11673-024-10343-1
T Baron, E Svingen, R Leyva
Surrogacy and adoption are both family-making measures subject to extensive domestic and international regulation. In this nationally representative survey study (N = 1552), we explore public attitudes to various forms of surrogacy and adoption in the United Kingdom, in response to an early proposal to allow "double donor" surrogacy as part of the ongoing legal reform project. We sought to both gauge public moral support for adoption and surrogacy generally, the effect that prospective parents' fertility had on this support, and the extent to which the public would find equivalencies between "double donor" surrogacy (DDS) and planned private adoption (PPA) to be morally significant. Our findings indicate that whilst there is broad baseline support for all forms of adoption and surrogacy, this support increases significantly when one or both prospective parents are infertile. These findings also suggest that the language in which a family-making arrangement is characterized has a greater influence on moral support for the arrangement than practical features such as the biological relationship (or absence thereof) between one/both parents and the child.
{"title":"Surrogacy and Adoption: An Empirical Investigation of Public Moral Attitudes.","authors":"T Baron, E Svingen, R Leyva","doi":"10.1007/s11673-024-10343-1","DOIUrl":"https://doi.org/10.1007/s11673-024-10343-1","url":null,"abstract":"<p><p>Surrogacy and adoption are both family-making measures subject to extensive domestic and international regulation. In this nationally representative survey study (N = 1552), we explore public attitudes to various forms of surrogacy and adoption in the United Kingdom, in response to an early proposal to allow \"double donor\" surrogacy as part of the ongoing legal reform project. We sought to both gauge public moral support for adoption and surrogacy generally, the effect that prospective parents' fertility had on this support, and the extent to which the public would find equivalencies between \"double donor\" surrogacy (DDS) and planned private adoption (PPA) to be morally significant. Our findings indicate that whilst there is broad baseline support for all forms of adoption and surrogacy, this support increases significantly when one or both prospective parents are infertile. These findings also suggest that the language in which a family-making arrangement is characterized has a greater influence on moral support for the arrangement than practical features such as the biological relationship (or absence thereof) between one/both parents and the child.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2024-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140327347","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-29DOI: 10.1007/s11673-024-10340-4
E Kendal
Victoria's Voluntary Assisted Dying Act 2017 (Vic) became the first state law to permit VAD in Australia under limited circumstances from June 2019. Before this, many palliative care physicians relied on the doctrine of double effect (DDE) to justify the use of pain relievers for terminally ill patients that were known to hasten death. The DDE claims that there is a morally significant difference between intending evil and merely foreseeing some bad side-effect will occur as a result of one's actions. This article argues that the legacy of the DDE is promoting inequitable access to VAD in Victoria due to the assumption that death represents an "evil" for the patient and that the intentions of physicians providing VAD cannot be trusted. The latter claim relies on two common objections to the DDE: the risk of "purifying the intentions" and the issue of "closeness" when evaluating moral acts under this theory.
{"title":"How the Doctrine of Double Effect Rhetoric Harms Patients Seeking Voluntary Assisted Dying.","authors":"E Kendal","doi":"10.1007/s11673-024-10340-4","DOIUrl":"https://doi.org/10.1007/s11673-024-10340-4","url":null,"abstract":"<p><p>Victoria's Voluntary Assisted Dying Act 2017 (Vic) became the first state law to permit VAD in Australia under limited circumstances from June 2019. Before this, many palliative care physicians relied on the doctrine of double effect (DDE) to justify the use of pain relievers for terminally ill patients that were known to hasten death. The DDE claims that there is a morally significant difference between intending evil and merely foreseeing some bad side-effect will occur as a result of one's actions. This article argues that the legacy of the DDE is promoting inequitable access to VAD in Victoria due to the assumption that death represents an \"evil\" for the patient and that the intentions of physicians providing VAD cannot be trusted. The latter claim relies on two common objections to the DDE: the risk of \"purifying the intentions\" and the issue of \"closeness\" when evaluating moral acts under this theory.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2024-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140327345","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-28DOI: 10.1007/s11673-024-10336-0
D Shaw
In this paper I discuss the important yet overlooked role played by time in public health ethics, clinical ethics, and personal ethics, and present an exploratory analysis of temporal inequalities and temporal autonomy.
{"title":"The Ethics of Time: Towards Temporal Bioethics.","authors":"D Shaw","doi":"10.1007/s11673-024-10336-0","DOIUrl":"https://doi.org/10.1007/s11673-024-10336-0","url":null,"abstract":"<p><p>In this paper I discuss the important yet overlooked role played by time in public health ethics, clinical ethics, and personal ethics, and present an exploratory analysis of temporal inequalities and temporal autonomy.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2024-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140319831","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-26DOI: 10.1007/s11673-024-10339-x
J Y Lee, R Bentzon, E Di Nucci
Bio-heteronormative conceptions of the family have long reinforced a nuclear ideal of the family as a heterosexual marriage, with children who are the genetic progeny of that union. This ideal, however, has also long been resisted in light of recent social developments, exhibited through the increased incidence and acceptance of step-families, donor-conceived families, and so forth. Although to this end some might claim that the bio-heteronormative ideal is not necessary for a social unit to count as a family, a more systematic conceptualization of the family-the kind of family that matters morally-is relatively underexplored in the philosophical literature. This paper makes a start at developing and defending an account of the family that is normatively attractive and in line with the growing prevalence of non-conventional families and methods of family-formation. Our account, which we call a constitutive-affirmative model of the family, takes the family to be constituted by an ongoing process of relevant affective and affirmative relations between the putative family members.
{"title":"What Is A Family? A Constitutive-Affirmative Account.","authors":"J Y Lee, R Bentzon, E Di Nucci","doi":"10.1007/s11673-024-10339-x","DOIUrl":"https://doi.org/10.1007/s11673-024-10339-x","url":null,"abstract":"<p><p>Bio-heteronormative conceptions of the family have long reinforced a nuclear ideal of the family as a heterosexual marriage, with children who are the genetic progeny of that union. This ideal, however, has also long been resisted in light of recent social developments, exhibited through the increased incidence and acceptance of step-families, donor-conceived families, and so forth. Although to this end some might claim that the bio-heteronormative ideal is not necessary for a social unit to count as a family, a more systematic conceptualization of the family-the kind of family that matters morally-is relatively underexplored in the philosophical literature. This paper makes a start at developing and defending an account of the family that is normatively attractive and in line with the growing prevalence of non-conventional families and methods of family-formation. Our account, which we call a constitutive-affirmative model of the family, takes the family to be constituted by an ongoing process of relevant affective and affirmative relations between the putative family members.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":" ","pages":""},"PeriodicalIF":2.4,"publicationDate":"2024-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140289485","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}