ABSTRACT:It may be too late to avoid the climate crisis, likely to be humanity's most expensive, widespread, and enduring catastrophe. This is a qualitatively different kind of catastrophe, in which increased costs, decreased revenue, and no possibility of bailout force communities to harshly cut budgets, especially in health care. Little is known about making such brutal cuts fair or efficient, nor how to help the public accept them. The crisis presents an opportunity for bioethicists to play a crucial role, but (...) one for which traditional approaches are inherently inadequate. Although often dismissed as heartless, Garrett Hardin's "lifeboat ethics" started a conversation about making ethical choices in global disasters—where all options are painful and unacceptable—and may provide guidance. Bioethics during the climate crisis must focus on communities rather than individuals and help survivors grieve the terrible consequences. Because today's choices will affect many generations, with the burdens falling most heavily on poor communities, we have to construct a radical bioethics to help tomorrow's health care become green, efficient, and fair. (shrink)

Volume 20, Issue 7, July 2020, Page 101-103.

Legal minds have utilized the principle of double effect as proposed by St. Thomas Aquinas for centuries to shape legal authority in cases where moral judgment and legal reasoning meet. The U.S. Supreme Court had uti­lized double-effect reasoning in the realm of self-defense cases. This article discusses more recent use of double-effect reasoning in the landmark Supreme Court case Vacco v. Quill and its companion case, Washington v. Glucksberg. Chief Justice William Rehnquist, writing for the Court in Vacco, introduced double-effect (...) reasoning to identify the distinctions between palliative care and assisted suicide in an effort to uphold the constitutionality of the ban on assisted suicide in New York. National Catholic Bioethics Quarterly 11.1 (Spring 2011): 41–48. (shrink)

*The views expressed are the author's own and should not be construed as representing the policies and opinions of the American Medical Association.

ABSTRACTThere is a growing body of literature describing conceptual frameworks for working with participatory visual methods. Through a global health lens, this paper examines some key themes within these frameworks. We reflect on our experiences of working with with an array of PVM to engage community members in Vietnam, Kenya, the Philippines and South Africa in biomedical research and public health. The participants that we have engaged in these processes live in under-resourced areas with high prevalence of communicable and non-communicable (...) diseases. Our paper describes some of the challenges that we have encountered while using PVM to foster knowledge exchange, build relationships and facilitate change among individuals and families, community members, health workers, biomedical scientists and researchers. We consider multiple ethical situations that have arisen through our work and discuss the ways in which we have navigated and negotiated them. We offer our reflections and learning from facil... (shrink)

This paper describes a network of three interconnected, multidisciplinary research projects designed to investigate environmental health issues faced by First Nations in Canada. These projects, developed in collaboration with academia, used a participatory approach meant to build capacity, raise awareness, and initiate change. The first project, which began in British Columbia in 2008, gathered information on the traditional diet; for example, its composition, nutritional quality, and potential for chemical exposure. This 10-year, Canada-wide project served as a model for two follow-up (...) projects: one on biomonitoring and another on indoor air quality. All three projects provided community ownership over the data and communicated results in a culturally sensitive manner to encourage interest in research and initiate risk reduction activities. The Assembly of First Nations, a national advocacy organization representing over 630 First Nations communities across Canada, participated in all aspects of the research while coordinating communications and arranging timely dissemination of results. These projects showed how properly executed, community-based research can be a valuable tool for stimulating interest in scientific studies while promoting self-reliance, components often missing from academic research. (shrink)

Background Non-therapeutic trials in which terminally ill cancer patients are asked to undergo procedures such as biopsies or venipunctures for research purposes, have become increasingly important to learn more about how cancer cells work and to realize the full potential of clinical research. Considering that implementing non-therapeutic studies is not likely to result in direct benefits for the patient, some authors are concerned that involving patients in such research may be exploitive of vulnerable patients and should not occur at all, (...) or should be greatly restricted, while some proponents doubt whether such restrictions are appropriate. Our objective was to explore clinician-researcher attitudes and concerns when recruiting patients who are in advanced stages of cancer into non-therapeutic research. Methods We conducted a qualitative exploratory study by carrying out open-ended interviews with health professionals, including physicians, research nurses, and study coordinators. Interviews were audio-recorded and transcribed. Analysis was carried out using grounded theory. Results The analysis of the interviews unveiled three prominent themes: 1) ethical considerations; 2) patient-centered issues; 3) health professional issues. Respondents identified ethical issues surrounding autonomy, respect for persons, beneficence, non-maleficence, discrimination, and confidentiality; bringing to light that patients contribute to science because of a sense of altruism and that they want reassurance before consenting. Several patient-centered and health professional issues are having an impact on the recruitment of patients for non-therapeutic research. Facilitators were most commonly associated with patient-centered issues enhancing communication, whereas barriers in non-therapeutic research were most often professionally based, including the doctor-patient relationship, time constraints, and a lack of education and training in research. Conclusions This paper aims to contribute to debates on the overall challenges of recruiting patients to non-therapeutic research. This exploratory study identified general awareness of key ethical issues, as well as key facilitators and barriers to the recruitment of patients to non-therapeutic studies. Due to the important role played by clinicians and clinician-researchers in the recruitment of patients, it is essential to facilitate a greater understanding of the challenges faced; to promote effective communication; and to encourage educational research training programs. (shrink)

There are some long-standing social issues that imperil Black Americans’ relationship with health and healthcare. These issues include racial disparities in health outcomes, provider bi...

Hastings Center Report, Volume 52, Issue S1, Page S21-S23, March‐April 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)

We seek to bring Black bodies and lives into full view within the enterprise of Indigenous health research to interrogate the unquestioned good that is taken to characterize contemporary Indigenous health research. We articulate a Black bioethics that is not premised upon a false logic of beneficence, rather we think through a Black bioethics premised upon an unconditional love for the Black body. We achieve this by examining the accounts of two Black mothers, (...) fictional and factual rendering visible the racial violence Black bodies have been subjected to. We call for a Black bioethics that reimagines the Black body as beautiful and belonging—to both someone and somewhere. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S3-S11, March‐April 2022.

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...

Hastings Center Report, Volume 52, Issue S1, Page S63-S65, March‐April 2022.

Hastings Center Report, Volume 52, Issue S1, Page S57-S59, March‐April 2022.

Hastings Center Report, Volume 52, Issue S1, Page S66-S68, March‐April 2022.

Hastings Center Report, Volume 52, Issue S1, Page S89-S89, March‐April 2022.

Using the example of Black people’s inequitable COVID-19 outcomes and their health outcomes prior to the pandemic, I argue that the pandemic has forever changed how we should think about the conceptual and practical nature of health equity. From here on, we can no longer think of health equity without the concept of intersectionality. In particular, we must acknowledge that discrimination (e.g. sexism, ableism, racism, classism, etc.) within our social institutions intersect to withhold resources needed for health from people (...) who themselves have intersecting identities that make them vulnerable to the effects of discrimination. To ignore intersectionality in our work on health equity would mean ignoring a great injustice imposed on some of the most overlooked people in our communities, which would also be a great disserve to bioethics’ professional longevity. (shrink)

This chapter shows that feminist bioethics begins with critical engagement. Feminist bioethics as perspective centers the experiences of women – women's health, challenges that women primarily face within health care contexts, gaps in research that are only understood as gaps when one takes women seriously as women. The chapter highlights a few significant breakthroughs in feminist theory broadly that have informed feminist bioethics as perspective and as methodology – standpoint theory, relational autonomy, and intersectionality – in order (...) to show how an intentionally feminist lens can improve bioethics for everyone. Feminists understood that healthcare generally, and bioethics, in particular, were important sites for feminist thought. The traditional view of autonomy in bioethics is centered on the individual. The chapter also highlights an example of public practice, The Black Mamas Matter Alliance, that shows the important work of Black women's community advocacy as a blueprint for a public feminist bioethics. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S79-S82, March‐April 2022.

Hastings Center Report, Volume 52, Issue S1, Page S18-S21, March‐April 2022.

Without doctors being able to explain medical decisions to patients, I argue their use of black box AIs would erode the effective and respectful care they provide patients. In addition, I argue that physicians should use AI black boxes only for patients in dire straits, or when physicians use AI as a “co-pilot” (analogous to a spellchecker) but can independently confirm its accuracy. I respond to A.J. London’s objection that physicians already prescribe some drugs without knowing why they (...) work. (shrink)

When we go to the doctor, he or she will not begin to treat us without taking our history – and not just our history but that of our parents and grandparents before us. The doctor will not see us u...

In “Artificial Intelligence, Social Media and Depression: A New Concept of Health-Related Digital Autonomy,” Laacke and colleagues posit a revised model of autonomy when using digital algori...

Mental health apps bring unprecedented benefits and risks to individual and public health. A thorough evaluation of these apps involves considering two aspects that are often neglected: the algorithms they deploy and the functions they perform. We focus on mental health apps based on black box algorithms, explore their forms of opacity, discuss the implications derived from their opacity, and propose how to use their outcomes in mental healthcare, self‐care practices, and research. We argue that there is a relevant (...) distinction between functions performed by algorithms in mental health apps, and we focus on the functions of analysis and generation of advice. When performing analytic functions, such as identifying patterns and making predictions concerning people's emotions, thoughts, and behaviors, black box algorithms can be better than other algorithms to provide information to identify early signs of relapse, support diagnostic processes, and improve research by generating outcomes that lead to a better understanding of mental health. However, when carrying out the function of providing mental health advice, black box algorithms have the potential to deliver unforeseen advice that may harm users. We argue that the outcomes of these apps may be trustworthy as a complementary source of information, but express caution about black box algorithms that give advice directly to users. To reap the benefits of mental health apps based on black box algorithms and avoid unintended consequences, we critically need to know whether these algorithms are fulfilling the function of providing mental health advice. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S60-S62, March‐April 2022.

In lieu of an abstract, here is a brief excerpt of the content:Black Horseman Lane: A ReflectionJanet PniewskiI felt a sinking feeling in the pit of my stomach upon getting the news this particular patient, let’s call him Stan, had burned through yet another nurse case manager and it would now be my responsibility to take charge of his care. As the medical director read aloud his patient profile, “Sixty–eight year old frail appearing Caucasian male with a terminal diagnosis (...) of...” I was already formulating excuses in my head as to why I would not be able to accept this charge. However, when she finished, I dutifully replied, “Ok, I’ll give it my best shot.” At the time, I was well aware that this assignment would test my resolve and commitment to providing the same high quality compassionate [End Page 117] care to every patient, but what I did not realize was how much I would grow personally and professionally in the process.Stan was well known in the organization for being “non–compliant” and “difficult.” Through his past actions he earned the label of racist and misogynist, having zero tolerance for people whom he perceived as different from him in any way. He was profoundly disrespectful toward women and was known to abuse his animals. Having been raised in a liberal household in New Jersey, surrounded by civil rights activists, animal activists and feminists, I was genetically programmed to abhor social injustice and raised to serve as an advocate for the disenfranchised and vulnerable. Since childhood, I’ve experienced visceral reactions to acts of injustice or cruelty of any kind. The very idea of someone like Stan was appalling.I found myself assigned to Stan’s case by default. He fired his first nurse because she was African American and painted her as dishonest and incompetent. He fired his second nurse because he was male and therefore must be gay. He fired his social worker because she was overweight, which certainly meant she was lazy. He fired the chaplain because he was not Catholic and thus unworthy of having any meaningful spiritual discourse. He would not accept the recommendations of our medical director because she was a woman. His family had given up on him a long time ago. His wife left him shortly after his youngest child had gone off to college, and all four of his children were estranged. Stan’s disease was progressing, despite therapy, and he was becoming too weak to care for himself at home without hospice support. His oncologist pleaded with us to give it one more try, even though we were running out of staff. These people that Stan had dismissed so unpleasantly were my colleagues and friends. The first nurse Stan dismissed served as my ever patient and knowledgeable preceptor when I was new to hospice and fumbling my way through unfamiliar protocols. The second nurse Stan rejected was a dedicated colleague and devoted friend, supporting me through several life challenges. I had witnessed our chaplain, judged as unworthy by Stan, tirelessly provide comfort to patients, family members and staff members in the darkest of hours. I knew them all as well–meaning, competent and compassionate team members and Stan’s disrespect for them offended me.Apparently, Stan was offended as well. His oncologist revealed to us that Stan was angered by his referral to hospice. He felt abandoned. I was Stan’s last hope; however, he didn’t see it that way. Neither Stan nor I was enthusiastic about our impending partnership.Stan was an engineer by trade, and apparently very successful in business. He lived on a sprawling plantation located at the end of his private road, which he named Black Horseman Lane. As I turned down the drive, aware of his reputation as a bigot, I contemplated how Stan might have arrived at this name. With the assistance of my smartphone, I was able to ascertain that there was, indeed, a Black Horseman of the Apocalypse, which was associated with famine. Delving further, into Wikipedia, my interpretation was that the Black Horseman’s famine decimated the grain crop, sparing the olive groves and grapevines, driving up the price of grain but leaving oil and wine... (shrink)

Black people experience lower quality and lesser quantity of sleep than white people. Researchers, however, do not believe that racial disparities in sleep sufficiency are caused by biological differences, but rather by various social differences, such as differences in sleeping environments and socioeconomic status. Racial disparities in sleep sufficiency are a matter of social justice because sleep is important to mental and physical health, meaning racial disparities in sleep sufficiency can contribute to unequal and unjust disparities in overall health. (...) Racial disparities in sleep may also be linked to other racial disparities in health that black people disproportionately experience such as hypertension and obesity. Sleep hygiene, common therapeutic advice given to help induce sleep, is often the first step to helping people sleep. Sleep hygiene, however, does not address the social, legal, cultural, and economic causes of racial disparities in sleep sufficiency. Sleep hygiene, as an ideal theory, addresses sleeplessness under ideal circumstances, only which a small group of privileged people live. Sleep hygiene ignores the unequal circumstances that contribute to some black people’s sleeplessness. Nonideal theory, however, acknowledges the less than ideal circumstances of certain groups, including people of color, and gives us a framework to develop solutions to racial disparities in sleep sufficiency. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S39-S41, March‐April 2022.

The U.S. healthcare system has a long history of displaying racist contempt toward Black people. From medical schools’ use of enslaved bodies as cadavers to the widespread hospital practice of reporting suspected drug users who seek medical help to the police, the institutional practices and policies that have shaped U.S. healthcare systems as we know them cannot be minimized as coincidence. Rather, the very foundations of medical discovery, diagnosis, and treatment are built on racist contempt for Black people (...) and have become self-perpetuating. Yet, I argue that bioethics and bioethicists have a role in combatting racism. However, in order to do so, bioethicists have to understand the workings of contemptuous racism and how that particular form of racism manifests in U.S. healthcare institutions. Insofar as justice is part of the core mission of bioethics, then antiracism must also be part of the mission of bioethics. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S12-S17, March‐April 2022.

In the September-October 2001 issue of the Hastings Center Report, editor Gregory Kaebnick encouraged bioethicists to turn their attention toward “easily overlooked, relatively little-talked-about societal topics” such as race. In 2000 the president of the American Society for Bioethics had called for a more socially conscious bioethics. Race was risky territory, Kaebnick pointed out, but this challenge did not justify avoidance. Over the next fifteen years, the response to this editor's invitation to examine the racial dimensions of medicine (...) in the Report was limited both in quantity and in terms of the range of topics covered. All told, the bioethics community has not responded to the editor's call for bioethicists to engage with the racial dimension of medicine, and the Report has not really come through on the tacit commitment made in 2001. The lack of interest in race matters evidenced in the Report as well as the American Journal of Bioethics has also prevailed in medical humanities journals, whose few pieces on race have tended to remove race relations from our current realities in two ways: some articles locate medical racism in the American past or in colonial Africa, while others analyze the medical disorders of fictional characters. Bioethicists have not embraced the opportunity to create a sociologically and historically informed bioethics that might be applied to the lives of black Americans and their unending health crisis. (shrink)

ABSTRACTThis commentary responds to genetic testing of African ancestry through a series of personal narratives that reveal a complex, intimate, and individualised process of identity formation. The author discusses both how her family and others outside her family have fostered and challenged her sense of black identity. She concludes by maintaining that racial identity is not in the genes but in the world in which we live and the stories we construct and are able to maintain.

Black women and their babies matter. In this commentary, we explore the current challenges that Black women face when pregnant and what is needed to ensure an anti-racist approach to prenatal and p...

This commentary responds to genetic testing of African ancestry through a series of personal narratives that reveal a complex, intimate, and individualised process of identity formation. The author discusses both how her family and others outside her family have fostered and challenged her sense of black identity. She concludes by maintaining that racial identity is not in the genes but in the world in which we live and the stories we construct and are able to maintain.

Race and religion are integral parts of bioethics. Harm and oppression, with the aim of social and political control, have been wrought in the name of religion against Blacks and people of color as embodied in the Ten Commandments, the Inquisition, and in the history of the Holy Crusades. Missionaries came armed with Judeo/Christian beliefs went to nations of people of color who had their own belief systems and forced change and caused untold harms because the indigenous belief systems (...) were incompatible with their own. The indigenous people were denounced as ungodly, pagan, uncivilized, and savage. Hence, laws were enacted because of their perceived need to structure a sense of morality and to create and build a culture for these indigenous people of color. To date bioethics continues to be informed by a Western worldview that is Judeo/Christian in belief and orientation. However, missing from bioethical discourse in America is the historical influence of the Black Church as a cultural repository, which continues to influence the culture of Africans and Blacks. Cultural aspects of peoples of color are still largely ignored today. In attempting to deal with issues of race while steering clear of the religious and cultural impact of the Black Church, bioethics finds itself in the middle of a distressing situation: it simply cannot figure out what to do with race. (shrink)

On Miranda Fricker’s influential account, the central case of testimonial injustice occurs if and only if the speaker receives a credibility deficit owing to identity prejudice of the hearer. Her critics have taken issue with her view, arguing that cases in which speakers are given more credibility than they deserve, may also amount to testimonial injustice. Furthermore, they argue, these cases cannot be captured by Fricker’s account of objectification as the primary epistemic harm of testimonial injustice; rather, it is an (...) account of othering that best captures a wide range of epistemic injustices. In this paper, I join Fricker’s critics in advancing a novel case of testimonial injustice through identity-prejudicial credibility excess – the adultification of black girls in testimony-giving settings. When testifying, black girls are likely to receive a credibility excess with respect to adult topics such as sex and consent because they are perceived as older, more self-reliable, and mature than they actually are by the hearers. Nevertheless, when examining the girls’ intersecting social identities defined by age, race and gender, it becomes clear that this constitutes an unjustly and prejudicially inflated estimation of their credibility. These cases also involve hermeneutical injustice since the identity-prejudicial credibility excess denies the victims a meaningful opportunity to make sense of their traumatic experiences of sexual assault. I conceptualize this compounded injustice as testimonial obfuscation, where an identity-prejudicial credibility evaluation (either in excess or deficit) causes an experience to remain unintelligible to the hermeneutically marginalized speaker. (shrink)

This commentary examines the use of Y-chromosome testing to reconstruct a genetic ancestry for the Lemba, a group in southern Africa.

This commentary examines the use of Y‐chromosome testing to reconstruct a genetic ancestry for the Lemba, a group in southern Africa that has long considered itself Jewish. The commentary looks especially at the reasons why this project drew such attention from the mainstream media.

Hospital ethics committees (HECs) and ethicists generally describe themselves as engaged in four domains of practice: case consultation, research, education, and policy work. Despite the increasing attention to quality indicators, practice standards, and evaluation methods for the other domains, comparatively little is known or published about the policy work of HECs or ethicists. This article attempts to open the ?black box? of this health care ethics practice by providing two detailed case examples of ethics policy reviews. We also describe (...) the development and application of an evaluation strategy to assess the quality of ethics policy review work, and to enable continuous improvement of ethics policy review processes. Given the potential for policy work to impact entire patient populations and organizational systems, it is imperative that HECs and ethicists develop clearer roles, responsibilities, procedural standards, and evaluation methods to ensure the delivery of consistent, relevant, and high-quality ethics policy reviews. (shrink)