Pub Date : 2024-09-09DOI: 10.1007/s11673-024-10378-4
M Bobbio, M Chiarlo, P Arcadi, E Kidd
In the last decade literature focused on a "less is more" approach has been primarily represented by clinical cases describing the excesses of an aggressive, redundant, non-personalized, and non-respectful medicine. Most of these articles focus on a "more is worse" approach and centre around the downstream negative consequences of medical overuse. Having identified a gap in the literature on the experience and practice of less, rather than the harms of excess, we carried out an exploratory qualitative study into how a "less is more" approach works in practice. A hermeneutic phenomenological approach was adopted to allow us to examine the realm of lived experience as a valid data source and as a path from which to understand a "less is more" approach "from the bedside." A Phenomenology of Practice was chosen as a more specific frame for this research because of its added focus on action and practical application in professional settings. Seventy stories written by physicians, patients, nurses, caregivers, and other health professionals have been received and analysed. These stories were gathered as part of a project called "Slow Stories" which aimed to collect clinical cases that have been positively resolved by adopting a "less is more" approach to patient care. After having conducted an in-depth analysis, separately and as a group, the researchers identified five key phenomenological themes; Time to relate is time to heal; Doing more does not mean doing better; Settings for a slow medicine; Slow care at the end of life; and Personalized vs. standardized treatment. Each of these themes offers insights into how a "less is more" approach can be used in practice and illustrates how a "less is more" strategy can play a significant role in positively resolving certain clinical cases.
{"title":"Practising Less is More: An Exploration of What it Means to See \"This Patient\" Not a \"Patient Like This\".","authors":"M Bobbio, M Chiarlo, P Arcadi, E Kidd","doi":"10.1007/s11673-024-10378-4","DOIUrl":"https://doi.org/10.1007/s11673-024-10378-4","url":null,"abstract":"<p><p>In the last decade literature focused on a \"less is more\" approach has been primarily represented by clinical cases describing the excesses of an aggressive, redundant, non-personalized, and non-respectful medicine. Most of these articles focus on a \"more is worse\" approach and centre around the downstream negative consequences of medical overuse. Having identified a gap in the literature on the experience and practice of less, rather than the harms of excess, we carried out an exploratory qualitative study into how a \"less is more\" approach works in practice. A hermeneutic phenomenological approach was adopted to allow us to examine the realm of lived experience as a valid data source and as a path from which to understand a \"less is more\" approach \"from the bedside.\" A Phenomenology of Practice was chosen as a more specific frame for this research because of its added focus on action and practical application in professional settings. Seventy stories written by physicians, patients, nurses, caregivers, and other health professionals have been received and analysed. These stories were gathered as part of a project called \"Slow Stories\" which aimed to collect clinical cases that have been positively resolved by adopting a \"less is more\" approach to patient care. After having conducted an in-depth analysis, separately and as a group, the researchers identified five key phenomenological themes; Time to relate is time to heal; Doing more does not mean doing better; Settings for a slow medicine; Slow care at the end of life; and Personalized vs. standardized treatment. Each of these themes offers insights into how a \"less is more\" approach can be used in practice and illustrates how a \"less is more\" strategy can play a significant role in positively resolving certain clinical cases.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142156544","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 : 2024-09-05DOI: 10.1007/s11673-024-10382-8
Sara Patuzzo Manzati, Antonella Galeone, Francesco Onorati, Giovanni Battista Luciani
A fundamental criterion considered essential to deem the procedure of vital organ procurement for transplantation ethical is that the donor must be dead, as per the Dead Donor Rule (DDR). In the case of Donation after Circulatory Death (DCD), is the donor genuinely dead? The main aim of this article is to clarify this uncertainty, which primarily arises from the fact that in DCD, death is determined based on cardiac criteria (Circulatory Death, CD), rather than neurological criteria (Brain Death, BD), and that to allow the procurement procedure, physicians reperfuse the organs in an assisted manner. To ensure that the cessation of circulation leads to the irreversible loss of brain functions, DCD regulations require that physicians wait a certain period after CD before commencing vital organ procurement. However, during this "no-touch period," the organs are at risk of damage, potentially rendering them unsuitable for transplantation. When DCD is performed on patients whose CD follows a Withdrawal of Life-Sustaining Treatment (WLST) (DCD Maastricht III category), how long should the no-touch period last? Does its existence really make sense? Does beginning the procedure of vital organ procurement immediately after WLST constitute a violation of the DDR that can be ethically justified? The discussion aims to provide arguments in support of the non-absoluteness of the DDR.
根据 "死亡捐献者规则"(DDR),要使重要器官移植程序合乎道德,一个基本标准是捐献者必须死亡。在循环死亡后捐献(DCD)的情况下,捐献者是否真正死亡?本文的主要目的是澄清这一不确定性,它主要源于以下事实:在 DCD 中,死亡是根据心脏标准(循环死亡,CD)而不是神经标准(脑死亡,BD)来确定的,而且为了进行器官获取程序,医生会以辅助方式对器官进行再灌注。为确保循环停止导致不可逆转的脑功能丧失,DCD 规定要求医生在 CD 之后等待一段时间再开始重要器官的采购。然而,在这段 "不接触期 "内,器官有受损的风险,可能导致其不适合移植。当对 CD 后停止维持生命治疗(WLST)(DCD 马斯特里赫特 III 类)的患者实施 DCD 时,禁触期应该持续多长时间?它的存在是否真的有意义?在生命垂危治疗结束后立即开始重要器官的获取程序是否构成违反 DDR,在伦理上是否合理?讨论的目的是为支持 "复员方案 "的非绝对性提供论据。
{"title":"Donation After Circulatory Death following Withdrawal of Life-Sustaining Treatments. Are We Ready to Break the Dead Donor Rule?","authors":"Sara Patuzzo Manzati, Antonella Galeone, Francesco Onorati, Giovanni Battista Luciani","doi":"10.1007/s11673-024-10382-8","DOIUrl":"https://doi.org/10.1007/s11673-024-10382-8","url":null,"abstract":"<p><p>A fundamental criterion considered essential to deem the procedure of vital organ procurement for transplantation ethical is that the donor must be dead, as per the Dead Donor Rule (DDR). In the case of Donation after Circulatory Death (DCD), is the donor genuinely dead? The main aim of this article is to clarify this uncertainty, which primarily arises from the fact that in DCD, death is determined based on cardiac criteria (Circulatory Death, CD), rather than neurological criteria (Brain Death, BD), and that to allow the procurement procedure, physicians reperfuse the organs in an assisted manner. To ensure that the cessation of circulation leads to the irreversible loss of brain functions, DCD regulations require that physicians wait a certain period after CD before commencing vital organ procurement. However, during this \"no-touch period,\" the organs are at risk of damage, potentially rendering them unsuitable for transplantation. When DCD is performed on patients whose CD follows a Withdrawal of Life-Sustaining Treatment (WLST) (DCD Maastricht III category), how long should the no-touch period last? Does its existence really make sense? Does beginning the procedure of vital organ procurement immediately after WLST constitute a violation of the DDR that can be ethically justified? The discussion aims to provide arguments in support of the non-absoluteness of the DDR.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-09-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142134319","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 : 2024-09-03DOI: 10.1007/s11673-024-10383-7
Isabel Munoz Beaulieu
“The Humanitarian Exit Dilemma” by Chin Ruamps explores the complex ethical challenges faced by humanitarian organizations when exiting projects in crisis settings, particularly armed conflict situations. The humanitarian exit dilemma arises in contexts where humanitarian assistance may generate an overall negative, rather than positive impact on affected populations due to potential entanglement in conflict situations. Yet, the book rejects a simplistic consequentialist account that focuses on maximizing harm-reduction and proposes a refreshing values-focused perspective. The book’s values-focused perspective emphasizes the importance of special relationships, distinct dependence, and reasonable expectations as essential considerations in the decision-making process on whether humanitarian organizations should stay and remain engaged or exit the conflict setting. In addition, the book proposes new humanitarian principles organizations could adopt, including the principles of vulnerability, causality, appropriateness, trust, and culpability. Humanitarian practitioners and policymakers, as well as (bio)ethicists, will find compelling insights of real-world policy on how value-based considerations can be incorporated when dealing with difficult trade-offs for vulnerable populations.
{"title":"Humanitarian Action and the Value of Relationships: A Book Review of Chin Ruamps’ The Humanitarian Exit Dilemma","authors":"Isabel Munoz Beaulieu","doi":"10.1007/s11673-024-10383-7","DOIUrl":"https://doi.org/10.1007/s11673-024-10383-7","url":null,"abstract":"<p>“The Humanitarian Exit Dilemma” by Chin Ruamps explores the complex ethical challenges faced by humanitarian organizations when exiting projects in crisis settings, particularly armed conflict situations. The humanitarian exit dilemma arises in contexts where humanitarian assistance may generate an overall negative, rather than positive impact on affected populations due to potential entanglement in conflict situations<i>.</i> Yet, the book rejects a simplistic consequentialist account that focuses on maximizing harm-reduction and proposes a refreshing values-focused perspective. The book’s values-focused perspective emphasizes the importance of special relationships, distinct dependence, and reasonable expectations as essential considerations in the decision-making process on whether humanitarian organizations should stay and remain engaged or exit the conflict setting. In addition, the book proposes new humanitarian principles organizations could adopt, including the principles of vulnerability, causality, appropriateness, trust, and culpability. Humanitarian practitioners and policymakers, as well as (bio)ethicists, will find compelling insights of real-world policy on how value-based considerations can be incorporated when dealing with difficult trade-offs for vulnerable populations.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142204254","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 : 2024-08-29DOI: 10.1007/s11673-024-10363-x
J Damgaard Thaysen, J Sønderholm
Human organs available for transplant are in short supply. One way to increase the supply of organs consists in legalizing a live donor market. Such a market is, however, controversial. This article is about an objection to live donor organ markets made by Simon Rippon. Rippon's objection is that the presence of a market option creates new social and legal pressures that harm the poor. Legalizing the option of selling your organs transforms into a harmful, and morally indefensible, social, and legal pressure to sell on the financially desperate. This article defends the conclusion that Rippon's argument fails as an objection to live donor organ markets. It fails because it has implausibly expansive implications about which markets are morally problematic. In short, Rippon's argument proves too much. Sections one and two introduce Rippon's argument. Sections three and four contain the argument against Rippon. The main argumentative move is that the features of an organ market that, according to Rippon, justify a ban on such a market are features that also characterize several other markets that are normally considered unproblematic, for example, markets where individuals sell their labour abroad in jobs that are dangerous. So, if an organ market should be legally impermissible, so should these labour markets. Section five considers several objections to the argument against Rippon. It is argued that these objections fail. Section six is a conclusion that sums up the findings of the article.
{"title":"Organ Markets, Options, and an Over-Inclusiveness Objection: On Rippon's Argument.","authors":"J Damgaard Thaysen, J Sønderholm","doi":"10.1007/s11673-024-10363-x","DOIUrl":"https://doi.org/10.1007/s11673-024-10363-x","url":null,"abstract":"<p><p>Human organs available for transplant are in short supply. One way to increase the supply of organs consists in legalizing a live donor market. Such a market is, however, controversial. This article is about an objection to live donor organ markets made by Simon Rippon. Rippon's objection is that the presence of a market option creates new social and legal pressures that harm the poor. Legalizing the option of selling your organs transforms into a harmful, and morally indefensible, social, and legal pressure to sell on the financially desperate. This article defends the conclusion that Rippon's argument fails as an objection to live donor organ markets. It fails because it has implausibly expansive implications about which markets are morally problematic. In short, Rippon's argument proves too much. Sections one and two introduce Rippon's argument. Sections three and four contain the argument against Rippon. The main argumentative move is that the features of an organ market that, according to Rippon, justify a ban on such a market are features that also characterize several other markets that are normally considered unproblematic, for example, markets where individuals sell their labour abroad in jobs that are dangerous. So, if an organ market should be legally impermissible, so should these labour markets. Section five considers several objections to the argument against Rippon. It is argued that these objections fail. Section six is a conclusion that sums up the findings of the article.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142114352","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 : 2024-08-29DOI: 10.1007/s11673-024-10384-6
Muriel Leuenberger
{"title":"Bioinformation and Identity Interests: A Book Review of Emily Postan's Embodied Narratives.","authors":"Muriel Leuenberger","doi":"10.1007/s11673-024-10384-6","DOIUrl":"https://doi.org/10.1007/s11673-024-10384-6","url":null,"abstract":"","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142114351","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 : 2024-08-22DOI: 10.1007/s11673-024-10352-0
L Lewis Wall, Douglas Brown
The struggle over legal abortion access in the United States is a religious controversy, not a scientific debate. Religious activists who believe that meaningful individual life (i.e., "personhood") begins at a specific "moment-of-conception" are attempting to pass laws that force this view upon all pregnant persons, irrespective of their medical circumstances, individual preferences, or personal religious beliefs. This paper argues that such actions promote a constitutionally prohibited "establishment of religion." Abortion policy in a secular state must be based upon scientifically accurate biology, not unprovable theological presuppositions. The scientific facts regarding human pregnancy do not support the position that personhood begins with fertilization-at which point a pregnancy does not yet even exist. Abortion policy should regard the embryo/fetus as part of the pregnant individual's body until delivery. We argue that individual "personhood" only begins when the latent potentialities of the fetal nervous system are actualized in the newborn after delivery. The paper argues that instantiating non-scientific beliefs concerning embryonic/fetal "personhood" into the law as the basis for abortion policy establishes a state-sponsored religion. The protection of religious liberty requires that abortion be decriminalized. Abortion should be treated like any other medical procedure and regulated similarly. To protect both religious freedom and sound medical practice, individual legal personhood should be recognized as beginning only at birth.
{"title":"Personhood Begins at Birth: The Rational Foundation for Abortion Policy in a Secular State.","authors":"L Lewis Wall, Douglas Brown","doi":"10.1007/s11673-024-10352-0","DOIUrl":"https://doi.org/10.1007/s11673-024-10352-0","url":null,"abstract":"<p><p>The struggle over legal abortion access in the United States is a religious controversy, not a scientific debate. Religious activists who believe that meaningful individual life (i.e., \"personhood\") begins at a specific \"moment-of-conception\" are attempting to pass laws that force this view upon all pregnant persons, irrespective of their medical circumstances, individual preferences, or personal religious beliefs. This paper argues that such actions promote a constitutionally prohibited \"establishment of religion.\" Abortion policy in a secular state must be based upon scientifically accurate biology, not unprovable theological presuppositions. The scientific facts regarding human pregnancy do not support the position that personhood begins with fertilization-at which point a pregnancy does not yet even exist. Abortion policy should regard the embryo/fetus as part of the pregnant individual's body until delivery. We argue that individual \"personhood\" only begins when the latent potentialities of the fetal nervous system are actualized in the newborn after delivery. The paper argues that instantiating non-scientific beliefs concerning embryonic/fetal \"personhood\" into the law as the basis for abortion policy establishes a state-sponsored religion. The protection of religious liberty requires that abortion be decriminalized. Abortion should be treated like any other medical procedure and regulated similarly. To protect both religious freedom and sound medical practice, individual legal personhood should be recognized as beginning only at birth.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142019452","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 : 2024-08-20DOI: 10.1007/s11673-024-10379-3
Alexandra Klimovich-Mickael, Mariusz Sacharczuk, Michel Edwar Mickael
Bioethics plays a pivotal role in guiding ethical decision-making within the realm of medical research and healthcare. However, the influence of geopolitics on bioethical considerations, particularly regarding bioweapons research, remains an underexplored area. This study delves into the uncharted territory of how international political interests can intersect with bioethical principles, potentially shaping collaborative efforts and global health policies related to bioweapons research. Through a hypothetical scenario involving a hypothetical pathogen, a collaborative effort between unspecified countries, we examine the implications of such cooperation on global health governance, with a specific focus on bioweapons research. Ethical dilemmas surrounding responsible research, potential risks and benefits, equitable distribution of findings, and biosafety measures are explored. This analysis underscores the importance of transparent and responsible practices in bioweapons research amidst geopolitical tensions. By striking a balance between national interests and international solidarity, we advocate for robust bioethical frameworks to navigate such collaborations for the collective well-being of humanity and to mitigate potential risks associated with bioweapons research.
{"title":"Navigating the Nexus of Bioethics and Geopolitics: Implications for Global Health Security and Scientific Collaboration.","authors":"Alexandra Klimovich-Mickael, Mariusz Sacharczuk, Michel Edwar Mickael","doi":"10.1007/s11673-024-10379-3","DOIUrl":"https://doi.org/10.1007/s11673-024-10379-3","url":null,"abstract":"<p><p>Bioethics plays a pivotal role in guiding ethical decision-making within the realm of medical research and healthcare. However, the influence of geopolitics on bioethical considerations, particularly regarding bioweapons research, remains an underexplored area. This study delves into the uncharted territory of how international political interests can intersect with bioethical principles, potentially shaping collaborative efforts and global health policies related to bioweapons research. Through a hypothetical scenario involving a hypothetical pathogen, a collaborative effort between unspecified countries, we examine the implications of such cooperation on global health governance, with a specific focus on bioweapons research. Ethical dilemmas surrounding responsible research, potential risks and benefits, equitable distribution of findings, and biosafety measures are explored. This analysis underscores the importance of transparent and responsible practices in bioweapons research amidst geopolitical tensions. By striking a balance between national interests and international solidarity, we advocate for robust bioethical frameworks to navigate such collaborations for the collective well-being of humanity and to mitigate potential risks associated with bioweapons research.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142009828","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 : 2024-08-20DOI: 10.1007/s11673-024-10376-6
Yuqiong Zhong, Tianchi Hao, Xing Liu, Xin Zhang, Ying Wu, Xiaomin Wang, Dan Luo
The international community has proposed a comprehensive strategy to prevent congenital abnormalities. And China, with a high incidence of congenital diseases, has implemented measures including prenatal screening and diagnosis to reduce the morbidity of congenital abnormalities. However, ethical challenges arise in the practice of prenatal screening and diagnosis among healthcare professionals. Five focus group discussions were conducted with twenty-four health professionals working in maternal and child health services in Hunan Province, China, to explore the ethical challenges they encountered in prenatal testing decision-making and information disclosure practices, as well as their views on these challenges. Participants were selected through purposive sampling, ensuring maximum demographic diversity. Three main themes were identified: 1) balancing between information disclosure and privacy protection; 2) patient-oriented decision-making and tensions within family-oriented decision-making; 3) the disparity between the limited help clinical ethics committees (CECs) can provide and professionals' need for CECs. Ethical norms for information disclosure and autonomous decision-making within prenatal screening and diagnostic institutions must be established. Utilizing CECs is crucial to guide professionals in delivering prenatal testing services while simultaneously focusing on targeted improvement of communication skills among these professionals.
{"title":"Ethical Challenges in Information Disclosure and Decision-making in Prenatal Testing: A Focus Group Study of Chinese Health Professionals in Maternal and Child Health Services.","authors":"Yuqiong Zhong, Tianchi Hao, Xing Liu, Xin Zhang, Ying Wu, Xiaomin Wang, Dan Luo","doi":"10.1007/s11673-024-10376-6","DOIUrl":"https://doi.org/10.1007/s11673-024-10376-6","url":null,"abstract":"<p><p>The international community has proposed a comprehensive strategy to prevent congenital abnormalities. And China, with a high incidence of congenital diseases, has implemented measures including prenatal screening and diagnosis to reduce the morbidity of congenital abnormalities. However, ethical challenges arise in the practice of prenatal screening and diagnosis among healthcare professionals. Five focus group discussions were conducted with twenty-four health professionals working in maternal and child health services in Hunan Province, China, to explore the ethical challenges they encountered in prenatal testing decision-making and information disclosure practices, as well as their views on these challenges. Participants were selected through purposive sampling, ensuring maximum demographic diversity. Three main themes were identified: 1) balancing between information disclosure and privacy protection; 2) patient-oriented decision-making and tensions within family-oriented decision-making; 3) the disparity between the limited help clinical ethics committees (CECs) can provide and professionals' need for CECs. Ethical norms for information disclosure and autonomous decision-making within prenatal screening and diagnostic institutions must be established. Utilizing CECs is crucial to guide professionals in delivering prenatal testing services while simultaneously focusing on targeted improvement of communication skills among these professionals.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142005715","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 : 2024-08-19DOI: 10.1007/s11673-024-10368-6
Yfke Ongena, Thomas C Kwee, Derya Yakar, Marieke Haan
While knowledge of the population's view on the need for informed consent for retrospective radiology research may provide valuable insight into how an optimal balance can be achieved between patient rights versus an expedited advancement of radiology science, this is a topic that has been ignored in the literature so far. To investigate the view of the general population, survey data were collected from 2407 people representative of the Dutch population. The results indicate that for non-commercial institutions, especially hospitals (97.4 per cent), respondents agree with the retrospective use of imaging data, although they generally indicate that their explicit consent is required. However, most respondents (63.5 per cent) would never allow commercial firms to retrospectively use their imaging data. When including only respondents who completed the minimally required reading time of 12.3 s to understand the description about retrospective radiology research given in the survey (n = 770), almost all (98.9 per cent) mentioned to have no objections for their imaging data to be used by hospitals for retrospective research, with 57.9 per cent indicating their consent to be required and 41.0 per cent indicating that explicit patient consent to be unnecessary. We conclude that the general population permits retrospective radiology research by hospitals, and a substantial proportion indicates explicit patient consent to be unnecessary when understanding what retrospective radiology research entails. However, the general population's support for the unrestricted retrospective use of imaging data for research purposes without patient consent decreases for universities not linked to hospitals, other non-commercial institutions, government agencies, and particularly commercial firms.
{"title":"Retrospective Radiology Research: Do We Need Informed Patient Consent?","authors":"Yfke Ongena, Thomas C Kwee, Derya Yakar, Marieke Haan","doi":"10.1007/s11673-024-10368-6","DOIUrl":"https://doi.org/10.1007/s11673-024-10368-6","url":null,"abstract":"<p><p>While knowledge of the population's view on the need for informed consent for retrospective radiology research may provide valuable insight into how an optimal balance can be achieved between patient rights versus an expedited advancement of radiology science, this is a topic that has been ignored in the literature so far. To investigate the view of the general population, survey data were collected from 2407 people representative of the Dutch population. The results indicate that for non-commercial institutions, especially hospitals (97.4 per cent), respondents agree with the retrospective use of imaging data, although they generally indicate that their explicit consent is required. However, most respondents (63.5 per cent) would never allow commercial firms to retrospectively use their imaging data. When including only respondents who completed the minimally required reading time of 12.3 s to understand the description about retrospective radiology research given in the survey (n = 770), almost all (98.9 per cent) mentioned to have no objections for their imaging data to be used by hospitals for retrospective research, with 57.9 per cent indicating their consent to be required and 41.0 per cent indicating that explicit patient consent to be unnecessary. We conclude that the general population permits retrospective radiology research by hospitals, and a substantial proportion indicates explicit patient consent to be unnecessary when understanding what retrospective radiology research entails. However, the general population's support for the unrestricted retrospective use of imaging data for research purposes without patient consent decreases for universities not linked to hospitals, other non-commercial institutions, government agencies, and particularly commercial firms.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142001201","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 : 2024-08-19DOI: 10.1007/s11673-024-10360-0
M Favaretto, M Rost
Prenatal ultrasound is a non-invasive diagnostic examination. Despite the recognized diagnostic value, this technology raises complex ethical questions. The aim of this study is to provide a comprehensive analysis that coherently maps the ethical challenges raised by prenatal ultrasound examination, both 2D and 3D. We performed a systematic literature review. Six databases were systematically searched. The results highlight how concerns related to beneficence, informed consent, and autonomy are mainly related to routine use of prenatal ultrasound in the clinical context, while considerations linked to overmedicalization of pregnancy, discrimination, and fetal ontology were often reported in relation to the impact ultrasound is having on medicine and society. Ethical issues in the context of pre-abortion ultrasound, obstetric practices in low-income settings, and keepsake ultrasound imaging were also greatly discussed. Since prenatal ultrasound practices critically impact pregnant people's autonomy and their role within pregnancy, we conclude that information providing strategies should be developed to appropriately inform pregnant people about the nature, purpose, risks, and choices revolving around prenatal ultrasound. In addition, as it is becoming increasingly difficult to separate the social and clinical dimensions of prenatal ultrasound, future research should focus on examining if and how such dimensions should be reconciled.
{"title":"\"A Picture Paints a Thousand Words\"-A Systematic Review of the Ethical Issues of Prenatal Ultrasound.","authors":"M Favaretto, M Rost","doi":"10.1007/s11673-024-10360-0","DOIUrl":"https://doi.org/10.1007/s11673-024-10360-0","url":null,"abstract":"<p><p>Prenatal ultrasound is a non-invasive diagnostic examination. Despite the recognized diagnostic value, this technology raises complex ethical questions. The aim of this study is to provide a comprehensive analysis that coherently maps the ethical challenges raised by prenatal ultrasound examination, both 2D and 3D. We performed a systematic literature review. Six databases were systematically searched. The results highlight how concerns related to beneficence, informed consent, and autonomy are mainly related to routine use of prenatal ultrasound in the clinical context, while considerations linked to overmedicalization of pregnancy, discrimination, and fetal ontology were often reported in relation to the impact ultrasound is having on medicine and society. Ethical issues in the context of pre-abortion ultrasound, obstetric practices in low-income settings, and keepsake ultrasound imaging were also greatly discussed. Since prenatal ultrasound practices critically impact pregnant people's autonomy and their role within pregnancy, we conclude that information providing strategies should be developed to appropriately inform pregnant people about the nature, purpose, risks, and choices revolving around prenatal ultrasound. In addition, as it is becoming increasingly difficult to separate the social and clinical dimensions of prenatal ultrasound, future research should focus on examining if and how such dimensions should be reconciled.</p>","PeriodicalId":50252,"journal":{"name":"Journal of Bioethical Inquiry","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142001200","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}