In this article, I propose an ethical analysis of assistive domestic robots for older users. In doing so, I illustrate my inquiry with the example of ROB-IN assistive robot. ROB-IN is a Spanish project which is devoted to developing a robot that will perform in the private home of nondependent, aged users. It is aimed to help people in their daily activities and contribute to appropriate health monitoring. One of their potentially most useful features is related to data gathering and sharing. For the inquiry on the ethical underpinnings of this case, I develop a framework for domestic assistive robots for competent older adults drawn on the ethics of care. I assess that this type of robots could be ethically appraised attending to their impact on the well-being and autonomy of users. I approach autonomy from a relational perspective, and I delve into the relationship between autonomy and well-being through the concept of paternalism. I argue that this type of assistive robots should never act paternalistically. Given ROB-IN great implications regarding privacy, I subsequently explore the ways in which the privacy of users should be respected in their interaction with assistive robots, focusing on the relation with autonomy and well-being. Lastly, I highlight the need for avoiding ageism. This investigation focuses on aged users, but it is suggested that the situation of caregivers should be also the object of further investigations.
{"title":"Navigating autonomy, privacy, and ageism in robot home care with aged users: A preliminary analysis of ROB-IN.","authors":"Belen Liedo","doi":"10.1111/bioe.13340","DOIUrl":"https://doi.org/10.1111/bioe.13340","url":null,"abstract":"<p><p>In this article, I propose an ethical analysis of assistive domestic robots for older users. In doing so, I illustrate my inquiry with the example of ROB-IN assistive robot. ROB-IN is a Spanish project which is devoted to developing a robot that will perform in the private home of nondependent, aged users. It is aimed to help people in their daily activities and contribute to appropriate health monitoring. One of their potentially most useful features is related to data gathering and sharing. For the inquiry on the ethical underpinnings of this case, I develop a framework for domestic assistive robots for competent older adults drawn on the ethics of care. I assess that this type of robots could be ethically appraised attending to their impact on the well-being and autonomy of users. I approach autonomy from a relational perspective, and I delve into the relationship between autonomy and well-being through the concept of paternalism. I argue that this type of assistive robots should never act paternalistically. Given ROB-IN great implications regarding privacy, I subsequently explore the ways in which the privacy of users should be respected in their interaction with assistive robots, focusing on the relation with autonomy and well-being. Lastly, I highlight the need for avoiding ageism. This investigation focuses on aged users, but it is suggested that the situation of caregivers should be also the object of further investigations.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":" ","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141857179","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
According to the sufficiency theory of justice in health, justice requires that people have equal access to adequate health. In this article, I lay out the structure of this view and I assess its distributive implications for setting priority (i) between health needs across persons and (ii) between health care spending and other societal goods. I argue, first, that according to the sufficiency theory, deficiency in health cannot be completely offset by providing other societal goods. And, second, that it can prevent the medicalization of societies by stressing that improvements beyond the level of adequate health have relatively little weight, if any, from the standpoint of justice.
{"title":"The sufficiency theory of justice and the allocation of health resources","authors":"Dick Timmer","doi":"10.1111/bioe.13338","DOIUrl":"10.1111/bioe.13338","url":null,"abstract":"<p>According to the sufficiency theory of justice in health, justice requires that people have equal access to adequate health. In this article, I lay out the structure of this view and I assess its distributive implications for setting priority (i) between health needs across persons and (ii) between health care spending and other societal goods. I argue, first, that according to the sufficiency theory, deficiency in health cannot be completely offset by providing other societal goods. And, second, that it can prevent the medicalization of societies by stressing that improvements beyond the level of adequate health have relatively little weight, if any, from the standpoint of justice.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 9","pages":"796-802"},"PeriodicalIF":1.7,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13338","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141857180","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The progress the Internet has experienced in recent years has brought about huge changes and social transformation in all aspects of our lives. One such aspect greatly impacted has been our health, where we can talk about the existence of an 'Internet of Medical Things'. Amid this digital drift, we have seen the development of pharmaceutical drugs that provide information to patients and their attending healthcare teams concerning medication, doses ingested, and time of ingestion. These are digital pills or digital medication. In this context, the purpose of my paper is to analyze the ethical and legal impact of digital medication, further analyzing the implications concerning the right of service users to make decisions over their own health in Spain.
{"title":"Digital medication and patients' right of autonomy in Spain.","authors":"Salvador Pérez Álvarez","doi":"10.1111/bioe.13335","DOIUrl":"https://doi.org/10.1111/bioe.13335","url":null,"abstract":"<p><p>The progress the Internet has experienced in recent years has brought about huge changes and social transformation in all aspects of our lives. One such aspect greatly impacted has been our health, where we can talk about the existence of an 'Internet of Medical Things'. Amid this digital drift, we have seen the development of pharmaceutical drugs that provide information to patients and their attending healthcare teams concerning medication, doses ingested, and time of ingestion. These are digital pills or digital medication. In this context, the purpose of my paper is to analyze the ethical and legal impact of digital medication, further analyzing the implications concerning the right of service users to make decisions over their own health in Spain.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":" ","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141857177","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Some feminists hold that surrogacy contracts should be unenforceable or illegal because they contribute to and perpetuate unjust gender inequalities. I argue that in developed countries, surrogacy contracts either wouldn't have these negative effects or that these effects could be mitigated via regulation. Furthermore, the existence of a regulated surrogacy market is preferable on consequentialist grounds.
{"title":"Does contract surrogacy undermine gender equality?","authors":"Jesse Hill","doi":"10.1111/bioe.13337","DOIUrl":"10.1111/bioe.13337","url":null,"abstract":"<p>Some feminists hold that surrogacy contracts should be unenforceable or illegal because they contribute to and perpetuate unjust gender inequalities. I argue that in developed countries, surrogacy contracts either wouldn't have these negative effects or that these effects could be mitigated via regulation. Furthermore, the existence of a regulated surrogacy market is preferable on consequentialist grounds.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 8","pages":"702-708"},"PeriodicalIF":1.7,"publicationDate":"2024-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13337","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141785283","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
As bioethics matures, a number of voices have called for a narrowing of what officially “counts” as bioethics. Bioethics defined broadly, they argue, creates a space that lacks objectivity and rigor, jeopardizing the credibility of the profession. Although a variety of proposed solutions exist, most advance a definitional narrowing of bioethics. In doing so, they mimic the siloed nature of the academy writ large, an institution that organizes itself through the logic of atomization, the belief that knowledge is generated through the process of isolation, examination, theorization, and ultimately reintegration. Borrowing language from Isaiah Berlin's essay “The Hedgehog and the Fox,” I argue that bioethics has thrived precisely because it stands distinct from other departments of learning, constituting one of the few places within the academy where true inter, multi, and cross-disciplinary scholarship can thrive. Reducing bioethics to an internally defined set of axiomatic rationales does violence to this vision, eroding, in the process, one of the field's greatest assets.
{"title":"Let the foxes run free: Arresting bioethics' inward turn","authors":"Dominic Robin","doi":"10.1111/bioe.13336","DOIUrl":"10.1111/bioe.13336","url":null,"abstract":"<p>As bioethics matures, a number of voices have called for a narrowing of what officially “counts” as bioethics. Bioethics defined broadly, they argue, creates a space that lacks objectivity and rigor, jeopardizing the credibility of the profession. Although a variety of proposed solutions exist, most advance a definitional narrowing of bioethics. In doing so, they mimic the siloed nature of the academy writ large, an institution that organizes itself through the logic of atomization, the belief that knowledge is generated through the process of isolation, examination, theorization, and ultimately reintegration. Borrowing language from Isaiah Berlin's essay “The Hedgehog and the Fox,” I argue that bioethics has thrived precisely because it stands distinct from other departments of learning, constituting one of the few places within the academy where true inter, multi, and cross-disciplinary scholarship can thrive. Reducing bioethics to an internally defined set of axiomatic rationales does violence to this vision, eroding, in the process, one of the field's greatest assets.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 8","pages":"684-691"},"PeriodicalIF":1.7,"publicationDate":"2024-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141772858","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Involuntary psychiatric holds, such as the 5150 hold in California, allow for an individual to be taken into custody for evaluation and treatment for up to 72 h when they present a risk of danger to themselves. 5150s and other coerced holds present a bioethical tension as patient autonomy is overridden to provide psychiatric care. I discuss two arguments that aim to provide ethical justifications for overriding patient autonomy during 5150 holds: the “clinical benefit” and “lack of capacity” arguments. By demonstrating that these arguments do not always hold, I argue that overriding patient autonomy during 5150 holds is not always ethical and can be harmful. Lastly, I make recommendations for the 5150 and similar involuntary psychiatric holds to minimize harmful breaches of patient dignity: creating consistent field guidelines for assessing prehospital capacity, educating prehospital providers about the potential harms of 5150s, and utilizing existing support structures within the social context of the patient when they have capacity to refuse further prehospital care.
{"title":"The ethics of overriding patient refusals during 5150s and other involuntary psychiatric holds","authors":"Alexander Quan","doi":"10.1111/bioe.13331","DOIUrl":"10.1111/bioe.13331","url":null,"abstract":"<p>Involuntary psychiatric holds, such as the 5150 hold in California, allow for an individual to be taken into custody for evaluation and treatment for up to 72 h when they present a risk of danger to themselves. 5150s and other coerced holds present a bioethical tension as patient autonomy is overridden to provide psychiatric care. I discuss two arguments that aim to provide ethical justifications for overriding patient autonomy during 5150 holds: the “clinical benefit” and “lack of capacity” arguments. By demonstrating that these arguments do not always hold, I argue that overriding patient autonomy during 5150 holds is not always ethical and can be harmful. Lastly, I make recommendations for the 5150 and similar involuntary psychiatric holds to minimize harmful breaches of patient dignity: creating consistent field guidelines for assessing prehospital capacity, educating prehospital providers about the potential harms of 5150s, and utilizing existing support structures within the social context of the patient when they have capacity to refuse further prehospital care.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 8","pages":"667-673"},"PeriodicalIF":1.7,"publicationDate":"2024-07-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141581616","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<p>In vitro fertilization (IVF) revolutionized procreation and family-making in the late 1970s by making possible the separation of <i>conception</i> from <i>sex</i>. Since the birth of the first “IVF baby” Louise Brown in 1978, techniques like IVF have routinized rapidly, against initial predictions: it is estimated that at least 12 million babies have been born with the help of IVF and other assisted reproductive technologies (ART).1 Furthermore, ART-related births are projected to reach at least 167 million people by the year 2100—if not much more.2 On the surface, it seems that everybody's reproductive autonomy is expanding in virtue of these developments: aspiring parents can potentially procreate with the help of third parties, as with innovations like gestational surrogacy and uterus transplantation (UTx), and even those not actively trying to procreate have options to cryopreserve their own gametes for later use. Given that people nowadays delay childbearing for various reasons3 and one in six people are reported to experience infertility worldwide,4 it seems plausible to assume that aspiring parents will continue to turn to reproductive technologies in the hopes of attaining biogenetic procreation where “natural” conception is not an option.</p><p>Despite this apparent normalization of ART as a mode of family-making, however, it would be naïve as bioethicists to assume that the only effect of such technologies is that of medically “solving” people's infertility problems and expanding reproductive autonomy.5 The narrative that the aim of ART is to treat infertility obscures and simplifies its far-reaching (and perhaps unintended) social implications and side effects, including for example, the gendered burdens and costs it can exacerbate for would-be gestators,6 and also disputes over parental rights.7 Bioethicists have shown that ART may be a useful lens through which to probe the normative boundaries of kinship,8 and even the legitimacy of the desire for biogenetically related children.9 At the same time, it is clear that the differentiated (un)availability of ART at the global level reflect pre-existing inequalities in the social sphere, such as socioeconomic disparities10 and sexual and racial discrimination in reproductive medicine.11 As such, the myriad functions, usage, and implementation of ART can be unpredictable, morally ambivalent, and unique to the social settings under which they are deployed. Uncertainties about the social construction of reproduction and family ties therefore gives rise to a need for continued scholarship in bioethics. Providing practitioners, third parties, and service users with actionable and up-to-date insights on how best to operationalize reproductive technologies in the name of family ties, while also promoting awareness about their current limitations, is an ethically important task.</p><p>Many of the open-ended questions one might ask in this field invite philosophical considerations. Who does ART
{"title":"Reproductive Technologies and family ties","authors":"Ji-Young Lee, Seppe Segers","doi":"10.1111/bioe.13334","DOIUrl":"10.1111/bioe.13334","url":null,"abstract":"<p>In vitro fertilization (IVF) revolutionized procreation and family-making in the late 1970s by making possible the separation of <i>conception</i> from <i>sex</i>. Since the birth of the first “IVF baby” Louise Brown in 1978, techniques like IVF have routinized rapidly, against initial predictions: it is estimated that at least 12 million babies have been born with the help of IVF and other assisted reproductive technologies (ART).1 Furthermore, ART-related births are projected to reach at least 167 million people by the year 2100—if not much more.2 On the surface, it seems that everybody's reproductive autonomy is expanding in virtue of these developments: aspiring parents can potentially procreate with the help of third parties, as with innovations like gestational surrogacy and uterus transplantation (UTx), and even those not actively trying to procreate have options to cryopreserve their own gametes for later use. Given that people nowadays delay childbearing for various reasons3 and one in six people are reported to experience infertility worldwide,4 it seems plausible to assume that aspiring parents will continue to turn to reproductive technologies in the hopes of attaining biogenetic procreation where “natural” conception is not an option.</p><p>Despite this apparent normalization of ART as a mode of family-making, however, it would be naïve as bioethicists to assume that the only effect of such technologies is that of medically “solving” people's infertility problems and expanding reproductive autonomy.5 The narrative that the aim of ART is to treat infertility obscures and simplifies its far-reaching (and perhaps unintended) social implications and side effects, including for example, the gendered burdens and costs it can exacerbate for would-be gestators,6 and also disputes over parental rights.7 Bioethicists have shown that ART may be a useful lens through which to probe the normative boundaries of kinship,8 and even the legitimacy of the desire for biogenetically related children.9 At the same time, it is clear that the differentiated (un)availability of ART at the global level reflect pre-existing inequalities in the social sphere, such as socioeconomic disparities10 and sexual and racial discrimination in reproductive medicine.11 As such, the myriad functions, usage, and implementation of ART can be unpredictable, morally ambivalent, and unique to the social settings under which they are deployed. Uncertainties about the social construction of reproduction and family ties therefore gives rise to a need for continued scholarship in bioethics. Providing practitioners, third parties, and service users with actionable and up-to-date insights on how best to operationalize reproductive technologies in the name of family ties, while also promoting awareness about their current limitations, is an ethically important task.</p><p>Many of the open-ended questions one might ask in this field invite philosophical considerations. Who does ART","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 7","pages":"589-591"},"PeriodicalIF":1.7,"publicationDate":"2024-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13334","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141565190","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Can a human right to good mental health be justified? This is an under-explored question: until recently, rights in relation to mental health have been framed and debated primarily in terms of their relevance to psychosocial disability and mental ill-health/mental distress. By contrast, in this article, I propose the basis of a normative justification for a population-wide right to good mental health, focusing in particular on individuals who do not experience mental ill-health/distress or do not have (or may never have) a psychiatric diagnosis or a psychosocial disability. The article is structured into three parts. First, I will outline the emergence of a population-wide right to good mental health in mental health discourse, led by recent reports published by the former United Nations Special Rapporteur on the Right to Health, Danius Pūras. I will then go on to explore what we might understand by ‘good mental health’. Finally, I will explain how a right to good mental health may be justified, drawing on insights from compassion, ‘vulnerable agency’, and James Wilson's account of ‘a right to public health’. I then respond to feasibility and demandingness concerns about such a right, which together inform the basis of the qualified public health right to good mental health I propose.
{"title":"Can a human right to good mental health be justified?","authors":"Phil Bielby","doi":"10.1111/bioe.13329","DOIUrl":"10.1111/bioe.13329","url":null,"abstract":"<p>Can a human right to good mental health be justified? This is an under-explored question: until recently, rights in relation to mental health have been framed and debated primarily in terms of their relevance to psychosocial disability and mental ill-health/mental distress. By contrast, in this article, I propose the basis of a normative justification for a population-wide right to good mental health, focusing in particular on individuals who do not experience mental ill-health/distress or do not have (or may never have) a psychiatric diagnosis or a psychosocial disability. The article is structured into three parts. First, I will outline the emergence of a population-wide right to good mental health in mental health discourse, led by recent reports published by the former United Nations Special Rapporteur on the Right to Health, Danius Pūras. I will then go on to explore what we might understand by ‘good mental health’. Finally, I will explain how a right to good mental health may be justified, drawing on insights from compassion, ‘vulnerable agency’, and James Wilson's account of ‘a right to public health’. I then respond to feasibility and demandingness concerns about such a right, which together inform the basis of the qualified public health right to good mental health I propose.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 8","pages":"733-740"},"PeriodicalIF":1.7,"publicationDate":"2024-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141536066","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The modern concept of ‘family’ in the United States recognizes many types of social groups as families, a conceptual shift which was largely helped along by advancements in assisted reproductive technologies enabling those formerly unable to biologically reproduce to have children, as well as by social movements aimed at garnering recognition for these emergent nonbiologically related social groups spearheaded by LGBTQ+ and adoption activists. That these social groups are now recognized as types of families is unquestionably an improvement to the concept, though there are still defects in the concept that preclude these nonnuclear families from achieving the same social–ontological status as nuclear families. Drawing from the nascent philosophical field of conceptual engineering, I analyze our current conception of ‘family’ and argue that it is tacitly exclusionary of nonnuclear families, which can be attributed to a combination of widespread genetic essentialism and linguistic practices that unduly cast the nuclear family as a more desirable type of family by emphasizing genetic relatedness as a valuable quality. I then offer proposals to ameliorate these defects, such as educational interventions to reduce genetic essentialism and the introduction of new terminology that does not connote one type of family as being superior to another. In doing so, my hope is to reveal and begin to resolve an overlooked defect in the concept of ‘family’ in order to bolster the movement to view all families as equal.
{"title":"Rethinking ‘family’: A call for conceptual amelioration","authors":"Ryan Xia-Hui Lam","doi":"10.1111/bioe.13333","DOIUrl":"10.1111/bioe.13333","url":null,"abstract":"<p>The modern concept of ‘family’ in the United States recognizes many types of social groups as families, a conceptual shift which was largely helped along by advancements in assisted reproductive technologies enabling those formerly unable to biologically reproduce to have children, as well as by social movements aimed at garnering recognition for these emergent nonbiologically related social groups spearheaded by LGBTQ+ and adoption activists. That these social groups are now recognized as types of families is unquestionably an improvement to the concept, though there are still defects in the concept that preclude these nonnuclear families from achieving the same social–ontological status as nuclear families. Drawing from the nascent philosophical field of conceptual engineering, I analyze our current conception of ‘family’ and argue that it is tacitly exclusionary of nonnuclear families, which can be attributed to a combination of widespread genetic essentialism and linguistic practices that unduly cast the nuclear family as a more desirable type of family by emphasizing genetic relatedness as a valuable quality. I then offer proposals to ameliorate these defects, such as educational interventions to reduce genetic essentialism and the introduction of new terminology that does not connote one type of family as being superior to another. In doing so, my hope is to reveal and begin to resolve an overlooked defect in the concept of ‘family’ in order to bolster the movement to view all families as equal.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 7","pages":"650-658"},"PeriodicalIF":1.7,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141472840","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sivan Tamir, Sivan Gazit, Shiri Sivan, Tal Patalon
The integration of genetic information (GI) into the electronic health record (EHR) seems inevitable as the mainstreaming of genomics continues. Such newly provided accessibility to GI could be beneficial for improving health care, as well as for supporting clinical decision-making and health management. Notwithstanding these promising benefits, the automatic integration of GI into the EHR, allowing unrestricted access to one's GI through patient portals, carries various knowledge-related risks for patients. This article is focused on the potential case of inadvertently revealing misattributed parentage through such practice. The article aims to identify key clinical and ethical implications of such revelation for adult patients. Clinical implications include, for example, altering the physician-patient interaction and the need to enhance physician's genetic literacy to improve genetic-information-specific communication skills. Ethical implications yield arguments supporting disclosure of MP, such as autonomy, individuals' right to know medical information pertaining to them, and the right to know one's genetic origins. Arguments opposing disclosure of MP centre on the right not to know GI and concerns for post-disclosure family relationships. Following the clinical and ethical analyses of these respective implications, we consider how such integration of GI into the EHR ought to be carried out, ethically. We therefore suggest a solution, featuring an autonomy-based approach, built around EHR users' right not to know. Our solution of nuanced consent options (including a ‘genetic ignorance option’) is designed to enable patients' informed exposure to GI through the EHR, allowing them some control over their self- and familial narrative.
随着基因组学的不断主流化,将基因信息(GI)整合到电子健康记录(EHR)中似乎不可避免。这种新提供的 GI 可访问性可能有利于改善医疗保健,并支持临床决策和健康管理。尽管这些好处前景广阔,但将 GI 自动整合到电子病历中,允许通过患者门户不受限制地访问自己的 GI,也会给患者带来各种与知识相关的风险。本文主要讨论通过这种做法无意中泄露错误亲子关系的潜在案例。文章旨在明确这种披露对成年患者的主要临床和伦理影响。临床影响包括,例如,改变医生与患者之间的互动,以及需要提高医生的遗传学素养,以改善与遗传信息相关的沟通技巧。伦理方面的影响产生了支持公开重大疾病信息的论点,如自主权、个人对与其相关的医疗信息的知情权以及对自身基因来源的知情权。反对公开 MP 的论点主要集中在不了解 GI 的权利和对公开后家庭关系的担忧上。在对这些各自的影响进行临床和伦理分析后,我们考虑了如何从伦理角度将基因图谱整合到电子病历中。因此,我们围绕电子病历用户的知情权,提出了一个以自主权为基础的解决方案。我们的解决方案包含细微差别的同意选项(包括 "基因无知选项"),旨在通过电子病历让患者在知情的情况下接触基因信息,使他们能够在一定程度上控制自己和家人的叙述。
{"title":"Revealing misattributed parentage through the integration of genetic information into the electronic health record","authors":"Sivan Tamir, Sivan Gazit, Shiri Sivan, Tal Patalon","doi":"10.1111/bioe.13332","DOIUrl":"10.1111/bioe.13332","url":null,"abstract":"<p>The integration of genetic information (GI) into the electronic health record (EHR) seems inevitable as the mainstreaming of genomics continues. Such newly provided accessibility to GI could be beneficial for improving health care, as well as for supporting clinical decision-making and health management. Notwithstanding these promising benefits, the automatic integration of GI into the EHR, allowing unrestricted access to one's GI through patient portals, carries various knowledge-related risks for patients. This article is focused on the potential case of inadvertently revealing misattributed parentage through such practice. The article aims to identify key clinical and ethical implications of such revelation for adult patients. Clinical implications include, for example, altering the physician-patient interaction and the need to enhance physician's genetic literacy to improve genetic-information-specific communication skills. Ethical implications yield arguments supporting disclosure of MP, such as autonomy, individuals' right to know medical information pertaining to them, and the right to know one's genetic origins. Arguments opposing disclosure of MP centre on the right <i>not</i> to know GI and concerns for post-disclosure family relationships. Following the clinical and ethical analyses of these respective implications, we consider how such integration of GI into the EHR ought to be carried out, ethically. We therefore suggest a solution, featuring an autonomy-based approach, built around EHR users' right <i>not</i> to know. Our solution of nuanced consent options (including a ‘genetic ignorance option’) is designed to enable patients' informed exposure to GI through the EHR, allowing them some control over their self- and familial narrative.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 8","pages":"741-750"},"PeriodicalIF":1.7,"publicationDate":"2024-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13332","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141472841","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}