February is Black History Month and so healthcare practitioners will soon rummage history books for information about famous African Americans, like Onesimus, the African slave who...

Bioethics, Volume 36, Issue 3, Page 290-297, March 2022.

In this article, I begin by describing what I call this Black Lives Matter moment in the US. I then offer three reasons for considering racism as a bioethical issue, the least discussed of which is the way in which racism acts as a barrier to the creation of better healthcare systems. Next, I argue that the concept of race itself constitutes a bioethical issue in a way that is not fully reducible to racism. Finally, I discuss how we, both (...) bioethicists and health care professionals, might meet this moment by identifying individual points of responsibility (beyond liability) for structural injustice. (shrink)

Jecker et al. (2024) propose seven ethical principles to guide international bioethics conferencing, applying them to the selection of Qatar as the location for the 2024 World Congress of Bioethics...

This paper opens a critical conversation about the ethics of international bioethics conferencing and proposes principles that commit to being anti-discriminatory, global, and inclusive. We launch this conversation in the Section, Case Study, with a case example involving the International Association of Bioethics’ (IAB’s) selection of Qatar to host the 2024 World Congress of Bioethics. IAB’s choice of Qatar sparked controversy. We believe it also may reveal deeper issues of Islamophobia in bioethics. The Section, Principles for International Bioethics Conferencing, sets (...) forth and defends proposed principles for international bioethics conferencing. The Section, Applying Principles to Site Selection applies the proposed principles to the case example. The Section, Applying Principles Beyond Site Selection addresses other applications of the proposed principles. The Section, Objections responds to objections. We close (in the Section, Conclusion) by calling for a wider discussion of our proposed principles.One-Sentence Capsule Summary: How should bioethicists navigate the ethics of global bioethics conferencing? (shrink)

In “Materialized Oppression in Medical Tools and Technologies”, we show how oppression can be inscribed in medical devices. We consider oximeters and spirometers, drawing heavily on the work of anthropologist Amy Moran-Thomas and historian Lundy Braun. Both devices encode racial biases: oximeters because they do not correct for race, and spirometers because they do. We zoom out from these particular devices to examine a wide range of tools and technologies, and we build a theoretical framework that covers not only race (...) but other axes of oppression: gender, ability, class, etc. -/- We are inspired by the peer commentaries and the guest editorial, and we are grateful to the contributors for engaging with our work and sharing their expertise. Their responses to our target article advance our understanding in three directions. First, a set of responses contextualize our framework within the histories of medicine, bioethics, and science and technology studies. Second, a set of responses provide additional examples of oppressive medical tools and technologies: not only material artifacts like oximeters and spirometers, but also spatial environments like inpatient psychiatric units, and cognitive niches comprised of digital technologies like electronic medical records and medical data classifications. Third, a set of responses propose countermeasures: operationalizing anti-oppressive practices for device design and testing; mapping the complex causal relationships involved in real-world problems; and repairing the harms done by materialized oppression through racism-conscious praxis. We reply to these three sets of responses—respectively, the “past, present, and future” of oppressive medical objects and spaces—in what follows. (shrink)

“Ignorance,” Jim Hudson, the art dealer, declares shortly before the climactic scene in the 2017 film, Get Out. “They mean well, but they have no idea what real people will go through”...

Intersectionality has become a significant intellectual approach for those thinking about the ways that race, gender, and other social identities converge in order to create unique forms of oppression. Although the initial work on intersectionality addressed the unique position of black women relative to both black men and white women, the concept has since been expanded to address a range of social identities. Here we consider how to apply some of the theoretical tools provided by intersectionality to the clinical context. (...) We begin with a brief discussion of intersectionality and how it might be useful in a clinical context. We then discuss two clinical scenarios that highlight how we think considering intersectionality could lead to more successful patient–clinician interactions. Finally, we extrapolate general strategies for applying intersectionality to the clinical context before considering objections and replies. (shrink)

Camisha Russell argues that this contemporary moment of societal reckoning with the value of Black lives is also a moment for considering racism as a bioethical issue. She continues that bioethicis...

A growing body of literature has engaged with mass incarceration as a public health problem. This article reviews some of that literature, illustrating why and how bioethicists can and should engage with the problem of mass incarceration as a remediable cause of health inequities. “Mass incarceration” refers to a phenomenon that emerged in the United States fifty years ago: imprisoning a vastly larger proportion of the population than peer countries do, with a greatly disproportionate number of incarcerated people being members (...) of marginalized racial and ethnic groups. Bioethicists have long engaged with questions of health justice for incarcerated people, including consent issues for those participating in research and access to health care. This article provides an overview of the individual and public health impacts of mass incarceration. The article argues that mass incarceration is a bioethics issue that should be addressed in medical education, identifies opportunities for bioethicists to guide hospitals’ interactions with law enforcement officials, and calls on bioethicists to be in conversation with medical and nursing students and health care professionals about these groups’ advocacy efforts concerning structural racism, police violence, and mass incarceration. (shrink)

Fabi and Goldberg make the important observation that skewed funding priorities in bioethics contribute to the perpetuation of injustice. Through a lens of structural racism, the authors dem...

Racism is a key driver of the social, political, and economic injustices that cause and maintain health inequities. Over centuries and across continents, racism has become deeply ingrained within societies. Therefore, we believe that it is our professional and ethical obligation as scientists, and public health scholars specifically, to address racism head on in order to ameliorate racialized health disparities. We argue that greater focus is needed on addressing racism rather than race and how race is described or defined. We (...) offer input from public health scholarship to help bioethicists and other scientists contribute to addressing racism. To do so effectively and comprehensively, public health scholars, bioethicists, and other scientists should work together to identify and implement equity-driven collaborations to eliminate the deleterious effects of racism on individuals, families, and communities. (shrink)

Across the world, an authoritarian and exclusionary form of populism is gaining political traction. Historically, some populist movements have been democratic and based on a sense of inclusive justice and the common good. But the populism on the rise at present speaks and acts otherwise. It is challenging constitutional democracies. The polarization seen in authoritarian populism goes beyond the familiar left-right political spectrum and generates disturbing forms of extremism, including the so-called alternative right in the United States and similar ethnic (...) and nationalistic political movements in other countries. The field of bioethics will be profoundly affected if authoritarian populism displaces constitutional democracy. But the field has a significant contribution to make to rebuilding the communal and civic foundations upon which constitutional democracy rests. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S24-S29, March‐April 2022.

Hastings Center Report, Volume 52, Issue S1, Page S46-S49, March‐April 2022.

Fabi and Goldberg raised important considerations regarding both research and funding priorities in the field of bioethics and, in particular, the field’s misalignment with social justice. W...

The consideration of racial differences in the biology of disease and treatment options is a hallmark of modern medicine. However, this time-honored medical tradition has no scientific basis, and the premise itself, that is, the existence of biological differences between the commonly known races, is false inasmuch as races are only sociocultural constructions. It is time to rid medical research of the highly damaging exercise of searching for supposed racial differences in the biological manifestations of disease. The practice not only (...) condoned but required by the National Institutes of Health of utilizing racial identification as a demographic characteristic with assumed biological implications is at best badly flawed, and at worst unintentionally contributes to perpetuating the fallacy of natural differences between persons of different skin color, which has been used in the past to advance the cause of racial discrimination. (shrink)

As physicians, the supreme importance of health and its integral role in any individual’s pursuit of life, liberty and happiness is exhibited on a daily basis. It is abundantly clear that without h...

Theological and secular voices in bioethics have drifted into separate silos. Such a separation results in part from theologians focusing less on conveying ideas in ways that contribute to a pluralistic and public bioethical discourse and the dwindling receptivity of religious arguments within secular bioethics. This essay works against these drifts by putting forward an argument that does not bounce around a religious echo-chamber, but instead demonstrates how insights of Christian anthropology can be meaningfully responsive to secular bioethics’ rightful concerns (...) with inequality and injustice. We offer core concepts from Christian bioethics that encourage dialogue with secular and theological bioethicists. The theologically-grounded concepts, human dignity, sin, and the common good, provide intellectual resources to address major areas of bioethical concern that remain unresolved. (shrink)

This paper discusses the ethical implications of racism and some of the various costs associated with racism occurring at the institutional level. We argue that, in many ways, the laws, social structures, and institutions in Western society have operated to perpetuate the continuation of historical legacies of racial inequities with or without the intention of individuals and groups in society. By merely maintaining existing structures, laws, and social norms, society can impose social, economic, and health costs on racial minorities that (...) impinge on their well-being and human dignity. Based on a review of multidisciplinary research on racism, particularly focusing on healthcare, we demonstrate how institutional racism leads to social and economic inequalities in society. By positing institutional racism as the inherent cause of avoidable disparities in healthcare, this paper draws attention to the ethical significance of racism, which remains a relatively neglected issue in bioethics research. (shrink)

It is well-known that racism is encoded into the social practices and institutions of medicine. Less well-known is that racism is encoded into the material artifacts of medicine. We argue that many medical devices are not merely biased, but materialize oppression. An oppressive device exhibits a harmful bias that reflects and perpetuates unjust power relations. Using pulse oximeters and spirometers as case studies, we show how medical devices can materialize oppression along various axes of social difference, including race, gender, class, (...) and ability. Our account uses political philosophy and cognitive science to give a theoretical basis for understanding materialized oppression, explaining how artifacts encode and carry oppressive ideas from the past to the present and future. Oppressive medical devices present a moral aggregation problem. To remedy this problem, we suggest redundantly layered solutions that are coordinated to disrupt reciprocal causal connections between the attitudes, practices, and artifacts of oppressive systems. (shrink)

Historically, laws and policies to criminalize drug use or possession were rooted in explicit racism, and they continue to wreak havoc on certain racialized communities. We are a group of bioethicists, drug experts, legal scholars, criminal justice researchers, sociologists, psychologists, and other allied professionals who have come together in support of a policy proposal that is evidence-based and ethically recommended. We call for the immediate decriminalization of all so-called recreational drugs and, ultimately, for their timely and appropriate legal regulation. We (...) also call for criminal convictions for nonviolent offenses pertaining to the use or possession of small quantities of such drugs to be expunged, and for those currently serving time for these offenses to be released. In effect, we call for an end to the “war on drugs.”. (shrink)

This paper responds to a proposal for an intersectional approach to the clinical encounter between patient and medical provider. We agree that an intersectional framework offers new insights and information in the clinical encounter. Intersectionality involves awareness of the physician-patient dynamic, and understanding the various privileges and disadvantages of all parties involved, at a micro and macroscopic level. Yet, this analysis alone is insufficient to aid in the clinical encounter and risks harm. We worry about a clinician making assumptions about (...) her patient’s race, gender, economic status, and how these influence the patient’s own views of her life and health. We argue that a narrative supplement is a necessary element of intersectional clinical encounters. Prioritizing patient narrative curtails assumptions, builds trust, and improves care. (shrink)

Background Increasing social pluralism adds to the already existing variety of heterogeneous moral perspectives on good care, health, and quality of life. Pluralism in social identities is also connected to health and care disparities for minoritized patient (i.e. care receiver) populations, and to specific diversity-related moral challenges of healthcare professionals and organizations that aim to deliver diversity-responsive care in an inclusive work environment. Clinical ethics support (CES) services and instruments may help with adequately responding to these diversity-related moral challenges. However, (...) although various CES instruments exist to support healthcare professionals with dealing well with morally challenging situations in healthcare, current tools do not address challenges specifically related to moral pluralism and intersectional aspects of diversity and social justice issues. This article describes the content and developmental process of a novel CES instrument called the Diversity Compass. This instrument was designed with and for healthcare professionals to dialogically address and reflect on moral challenges related to intersectional aspects of diversity and social justice issues that they experience in daily practice. Methods We used a participatory development design to develop the Diversity Compass at a large long-term care organization in a major city in the Netherlands. Over a period of thirteen months, we conducted seven focus groups with healthcare professionals and peer-experts, carried out five expert interviews, and facilitated four meetings with a community of practice consisting of various healthcare professionals who developed and tested preliminary versions of the instrument throughout three cycles of iterative co-creation. Results The Diversity Compass is a practical, dialogical CES instrument that is designed as a small booklet and includes an eight-step deliberation method, as well as a guideline with seven recommendations to support professionals with engaging in dialogue when they are confronted with diversity-related moral challenges. The seven recommendations are key components in working toward creating an inclusive and safe space for dialogue to occur. Conclusions The Diversity Compass seeks to support healthcare professionals and organizations in their efforts to facilitate awareness, moral learning and joint reflection on moral challenges related to diversity and social justice issues. It is the first dialogical CES instrument that specifically acknowledges the role of social location in shaping moral perspectives or experiences with systemic injustices. However, to make healthcare more just, an instrument like the Diversity Compass is not enough on its own. In addition to the Diversity Compass, a systemic and structural approach to social justice issues in healthcare organizations is needed in order to foster a more inclusive, safe and diversity-responsive care and work environment in health care organizations. (shrink)

As members of a neuroethics research group funded by the NIH, we echo the call from Fabi and Goldberg for greater funding parity between the ethics of specialized medical technologies and br...

Hastings Center Report, Volume 52, Issue S1, Page S35-S38, March‐April 2022.

Camisha Russell has written a beautiful essay articulating why race and racism should be centered within bioethics. I agree with her assertion that Black Lives Matter (and the subsequent backlash t...

As the twin pandemics of COVID-19 and state violence against Black Americans dominated our national landscape in the spring of 2020, many in medicine, nursing, and public health made renewed calls...

BackgroundClinical ethics consultations can be complex interventions, involving multiple methods, stakeholders, and competing ethical values. Despite longstanding calls for rigorous evaluation in the field, progress has been limited. The Medical Research Council proposed guidelines for evaluating the effectiveness of complex interventions. The evaluation of CEC may benefit from application of the MRC framework to advance the transparency and methodological rigor of this field. A first step is to understand the outcomes measured in evaluations of CEC in healthcare settings. ObjectiveThe primary (...) objective of this review was to identify and map the outcomes reported in primary studies of CEC. The secondary objective was to provide a comprehensive overview of CEC structures, processes, and roles to enhance understanding and to inform standardization.MethodsWe searched electronic databases to identify primary studies of CEC involving patients, substitute decision-makers and/or family members, clinicians, healthcare staff and leaders. Outcomes were mapped across five conceptual domains as identified a priori based on our clinical ethics experience and preliminary literature searches and revised based on our emerging interpretation of the data. These domains included personal factors, process factors, clinical factors, quality, and resource factors. ResultsForty-eight studies were included in the review. Studies were highly heterogeneous and varied considerably regarding format and process of ethical intervention, credentials of interventionist, population of study, outcomes reported, and measures employed. In addition, few studies used validated measurement tools. The top three outcome domains that studies reported on were quality, process factors, and clinical factors. The majority of studies examined multiple outcome domains. All five outcome domains were multidimensional and included a variety of subthemes.ConclusionsThis scoping review represents the initial phase of mapping the outcomes reported in primary studies of CEC and identifying gaps in the evidence. The confirmed lack of standardization represents a hindrance to the provision of high quality intervention and CEC scientific progress. Insights gained can inform the development of a core outcome set to standardize outcome measures in CEC evaluation research and enable scientifically rigorous efficacy trials of CEC. (shrink)

In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of (...) traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research. (shrink)

BackgroundBioethics can play an important role in addressing diversity both in and outside of academia, setting precedents for meaningful contributions to public discourse, research, teaching, training, and policy development. However, in order to do so, these conversations also need to reflect on the issue of diversity within the field of bioethics across the globe. This study aims to examine current gender representation and diversity at medical ethics and humanities institutes in Germany, the German-speaking areas of Switzerland, and Austria.MethodsA total of (...) forty-nine medical ethics and humanities institutes from Germany (n=42), the German-speaking areas of Switzerland (n=5), and Austria (n=2) were included in the study. Institutes websites were reviewed in the first week of March 2021 and the details of each staff member listed on the website recorded.ResultsOverall, a total of 964 staff members were identified at the forty-nine German-speaking medical ethics and humanities institutes. Just over half (530/964; 55%) of all staff were female. There were significant differences between gender in some staff positions: 64.6 per cent (31/48) of directors were male (χ2(1)=4.1, P=.04); 62.7 per cent (84/134) of student assistants were female (χ2(1)=8.6, P=.003); and 83.7 per cent (77/92) of administrative staff were female (χ2(1)=41.8, P<.001). There were no significant differences between staff gender for researchers and lecturers, or associated researchers. In addition, 65.5 per cent (19/29) of researchers and lecturers who had a professor title were male, but the difference between genders was not found to be significant. However, significantly more of the researchers and lecturers who had completed a habilitation were male (75.8% (25/33); χ2(1)=8.8, P=.003). When comparing the institute director’s gender presentation with staff gender presentation, it was found that male-led institutes had 53.4 per cent (286/536) female staff overall but had 52.7 per cent (136/258) male researchers and lecturers. However, the difference between genders were not found to be significant. On the other hand, female-led institutes had significantly more female staff overall (59.9% (223/372); χ2(1)=14.7, P<.001) and also significantly more female researchers and lecturers (58.9% (119/202; χ2(1)=6.4, P=.01).ConclusionsThere has been a significant push to address gender diversity in German-speaking academia, and this study finds overall good gender parity in medical ethics and humanities institutes. However, there has not been a similar openness to discussing issues of systemic racism or how other forms of inequality affect academic diversity. Taking diversity seriously requires opening up conversations around intersectionality, including difficult conversations around race and cultural background that have long been taboo in German-speaking countries. (shrink)