Deep brain stimulation (DBS), a surgical procedure involving the implantation of electrodes in the brain, has rekindled the medical community’s interest in psychosurgery. Whereas many researchers argue DBS is substantially different from psychosurgery, we argue psychiatric DBS—though a much more precise and refined treatment than its predecessors—is nevertheless a form of psychosurgery, which raises both old and new ethical and legal concerns that have not been given proper attention. Learning from the ethical and regulatory failures of older forms of psychosurgery (...) can help shed light on how to address the regulatory gaps that exist currently in DBS research. To show why it is important to address the current regulatory gaps within psychiatric DBS, we draw on the motivations underlying the regulation of earlier forms of psychosurgery in the US. We begin by providing a brief history of psychosurgery and electrical brain stimulation in the US. Against this backdrop, we introduce psychiatric DBS, exploring current research and ongoing clinical trials. We then draw out the ethical and regulatory similarities between earlier forms of psychosurgery and psychiatric DBS. As we will show, the factors that motivated strict regulation of earlier psychosurgical procedures mirror concerns with psychiatric DBS today. We offer three recommendations for psychiatric DBS regulation, which echo earlier motivations for regulating psychosurgery, along with new considerations that reflect the novel technologies used in DBS. (shrink)

Christians have an obligation to attend to the voices of persons who are crying out that their dignity and very lives are in jeopardy when physician-assisted suicide becomes legalized. The following essay begins with an account of the concept of “disability moral psychology,” which elucidates the unique ways persons with disabilities perceive the world, based on their phenomenological experience. The author then explores the disability critique of PAS and the shared social conditions of persons who are chronically disabled and terminally (...) ill. Finally, the author positions the disability critique within Christian moral deliberations on PAS to unearth its significance for Christian ethics. To bear witness to a compassionate God, theological and ethical judgments concerning PAS must seek perspectives from persons who claim that their dignity and even their lives are in jeopardy by the practice. (shrink)

This book uses insights from disability studies to understand in a deeper way the ethical implications that genetic technologies pose for Christian thought. Theologians have been debating genetic engineering for decades, but what has been missing from many theological debates is a deep concern for persons with genetic disabilities. In this ambitious and stimulating book, Devan Stahl argues that engagement with metaphysics and a theology of nature is crucial for Christians to evaluate both genetic science and the moral use (...) of genetic technologies, such as human genetic engineering, gene therapy, genetic screenings, preimplantation genetic diagnosis, and gene editing. Using theological notions of creation ex nihilo and natural law alongside insights from disability studies, the book seeks to recast the debate concerning genetic well-being. Following the work of Stanley Hauerwas, Stahl proposes the church as the locus for reimagining disability in a way that will significantly influence the debates concerning genetic therapies. Stahl's project in "genethics" proceeds with an acute awareness of her own liberal Protestant tradition's early embrace of the eugenics movement in the name of scientific and medical advancement, and it constructively engages the Catholic tradition's metaphysical approach to questions in bioethics to surpass limitations to Protestant thinking on natural law. Christianity has all too frequently been complicit in excluding, degrading, and marginalizing people with disabilities, but the new Christian metaphysics developed here by way of disability perspectives provides normative, theological guidance on the use of genetic technologies today. As Stahl shows in her study, only by heeding the voices of people with disabilities can Christians remain faithful to the call to find Christ in "the least of these" and from there draw close to God. This book will be of interest to scholars in Christian ethics, bioethics, moral theology, and practical theology. (shrink)

The regulations dictating acceptable levels of risk in pediatric research were developed to protect pediatric research participants from unnecessary or excessive harms. These special protections we...

Women’s pain remains underappreciated, undertheorized, and undertreated in both medicine and theology. The ascetic practices of women in pain, however, can help Christians understand and navigate their own pain and suffering, particularly because they are experienced in the context of chronic illness and disability. In what follows, I argue that Christians would do better to view the pain that accompanies disability and chronic illness as a potential resource for spiritual practice rather than an example of sin or evil. I begin (...) with a brief overview of the most common theological explanations for the relationship between disability and sin within contemporary Christian writings on disability. What is often neglected in these conversations is the acknowledgment of pain in the disability experience. Likewise, discussions of evil often attempt to explain the existence of pain and suffering, but rarely address the practical realities of pain. As a way to begin to remedy the lack of attention to the experience of chronic pain for those living with illness and disability, I consider what it would mean to live faithfully with pain by examining the lives of three holy women who provide examples of what it means to interpret, manage, and share their pain within the body of Christ. (shrink)

Over one hundred years after Max Weber delivered his lecture “Science as a Vocation,” his description of the work of the physician in a disenchanted world still resonates. As a chronically ill patient who interacts with physicians frequently, I struggle with reconciling my understanding of my ill body with how my physician makes sense of my illness. My diagnosis created an existential crisis that caused me to search for meaning in my embodied experience, but I soon learned there is little (...) room for such a search within modern biomedicine. Instead, I turned to fine art to help me make sense of my ill body and its purpose in my life. With the aid of my printmaker sister, Darian Goldin Stahl, I have transformed the magnetic resonance images of my body into works of art, which help to re-enchant my body and give purpose to my illness. (shrink)

For centuries, philosophers and theologians debated the meaning of monstrous births. This article describes the debates that took place in the early modern period concerning the origins of monstrous births and examines how they might be relevant to our understanding of disability today. I begin with the central questions that accompanied the birth of conjoined twins in the early 17th century as well as the theological origins of those questions. I then show the shifts that occurred in philosophical debate in (...) the 18th century, which reveal the changing understanding of God’s interaction with creation, as well as the burgeoning medical responses to monstrous births. By reexamining these earlier debates, I claim some of the earlier questions posed by philosophers and theologians have been neglected but remain relevant in bioethics debates concerning how best to consider and treat newborns with certain disabilities. (shrink)

Examines the promises and perils of bioenhancement technologies for those most vulnerable to health disparities: persons with disabilities, racial and ethnic minorities, and women.

The author argues that genetic technologies can never be fully sepa­rated from their eugenic ends. Because of this, the Church’s sexual ethic must be integrated with its social teaching to respond faithfully to ethical issues that arise with the use of genetic technologies. The author discusses, first, the Catholic opposition to eugenics from the turn of the twentieth century to the official papal condemnation of eugenics in 1930; next, the Church’s reaction to advances in DNA research in the 1950s and (...) 60s; and finally, the shift from optimism to caution from the 1970s on, as new genetic technologies emerged in embryonic stem cell research, genetic counseling, and gene therapy. The author explores both the sources on which the Church has drawn in responding to genetic advances and the social issues that should prove fruitful for con­templation in the future. (shrink)

The rapid development of COVID-19 vaccines in 2020 involved an unprecedented clinical research initiative. The case here involves a Phase I clinical trial of “second-generation” COVID-19 vaccines d...

As part of the regulatory review process, both the Food and Drug Administration and Office for Human Research Protections (U.S. Department of Health and Human Services [HHS]...

In this paper I will show how the medical image, presented to the patient by the physician, participates in medicine's cold culture of abstraction, objectification and mandated normativity. I begin by giving a brief account of the use of anatomical imaging since the Renaissance to show how images have historically functioned in contrast to how they are currently used in medical practice. Next, I examine how contemporary medical imaging techniques participate in a kind of knowledge production that objectifies the human (...) body. Finally, I elucidate how physicians ought to place the medical image within the context of the lived body so as to create a healing relationship with the patient. In all this I hope to show that the medical image, far from a piece of objective data, testifies to the interplay of particular beliefs, practices and doctrines contemporary medicine holds dear. To best treat her patient, the physician must appreciate the influence of these images and appropriately place them within the context of the patient's lived experience. (shrink)

Volume 20, Issue 4, May 2020, Page 102-103.

Ableist attitudes and structures regarding disability are increasingly recognized across all sectors of healthcare delivery. After Dobbs, novel questions arose in the USA concerning how to protect reproductive autonomy while avoiding discrimination against and devaluation of disabled persons. As a case study, we examine the Louisiana’s Department of Public Health August 1st Emergency Declaration, “List of Conditions that shall deem an Unborn Child ‘Medically Futile.’” We raise a number of medical, ethical, and public health concerns that lead us to argue (...) the declaration should be rescinded. The ethically objectionable declaration provides valuable lessons concerning how to uphold both reproductive and disability justice in a post-Dobbs landscape. (shrink)

This essay reflects on occasions when images of the author’s body stirred wonder and challenged the author’s understanding of her relationship to her body. Wonder is not a sentimental or romantic feeling, but an intermingling of both admiration and fear. Wonder is perhaps closest to awe, which has connotations of both reverence and terror. Wonder holds together both the negative and positive emotions that awe once elicited. Finding wonder in your own body, therefore, can be both a fearful and exhilarating (...) experience, one that demands a kind of reconstitution of the self, since the body that was once taken for granted has now become alien. (shrink)

Volume 20, Issue 10, October 2020, Page 82-83.

Volume 20, Issue 4, May 2020, Page 111-113.

Disability theology has been a small but growing field over the past thirty years. This paper reviews the current methods used in the discipline and proposes ways to move the field forward. Two intersections between disability studies and Christian theological ethics are explored in particular: bioethics and critical theory. Bioethics helps to address the material health and wellbeing concerns of people with disabilities and the discriminatory attitudes about disability that stem from the medical field. Critical theory on the other hand, (...) examines disability through cultural productions that shape our ableist imaginary. Critical theory offers resources for countering or “disciplining” our imaginations. Both bioethics and critical theory offer unique entry points into disability, but each also contains limitations that reveal why disability theology must continue to engage multiple methods and discourses. (shrink)

For many persons with chronic illness and disability, medical images can come to represent their stigmatized “otherness.” A growing group of artists, however, are transforming their medical images into works of visual art, which better represent their lived experience and challenge viewers to see disability and illness differently. Although few of these artists are self-professed Christians, they challenge the Church to live into the communion to which it has been called. Using a method of correlation, Christian ethicists can find within (...) this art the potential for: creative resistance to modern deployments of biopower, a celebration of divine poiesis, opportunities for communion, and prophetic challenges to the cult of normalcy. Disability art encourages a new ethic of communion in which embodied vulnerabilities are shared, celebrated, and reoriented toward the ground of being. (shrink)

For many rare diseases, the availability of effective interventions is limited or non-existent. In this context, clinical research evaluating emerging interventions may be the only potentially “the...

Background Standard interpretations of the ethical principle of respect for persons have not incorporated the views and values of patients, especially patients from groups underrepresented in research. This limits the ability of research ethics scholarship, guidance, and oversight to support inclusive, patient-centered research. This study aimed to identify the practical approaches that patients in community-based settings value most for conveying respect in genomics research. Methods We conducted a 3-round, web-based survey using the modified Delphi technique to identify areas of agreement (...) among English-speaking patients at primary care clinics in Washington State and Idaho who had a personal or family history of cancer. In Round 1, respondents rated the importance of 17 items, identified in prior qualitative work, for feeling respected. In Round 2, respondents re-rated each item after reviewing overall group ratings. In Round 3, respondents ranked a subset of the 8 most highly rated items. We calculated each item’s mean and median rankings in Round 3 to identify which approaches were most important for feeling respected in research. Results Forty-one patients consented to the survey, 21 (51%) completed Round 1, and 18 (86% of Round 1) completed each of Rounds 2 and 3. Two sets of rankings were excluded from analysis as speed of response suggested they had not completed the Round 3 ranking task. Respondents prioritized provision of study information to support decision-making (mean ranking 2.6 out of 8; median ranking 1.5) and interactions with research staff characterized by kindness, patience, and a lack of judgment (mean ranking 2.8; median ranking 2) as the most important approaches for conveying respect. Conclusions Informed consent and interpersonal interactions are key ways that research participants experience respect. These can be supported by other approaches to respecting participants, especially when consent and/or direct interactions are infeasible. Future work should continue to engage with patients in community-based settings to identify best practices for research without consent and examine unique perspectives across clinical and demographic groups in different types of research. (shrink)

Review of Paul Copan, Is God a Moral Monster? Making Sense of the Old Testament God, (Grand Rapids: Baker, 2011).

When the Neo- or "New Atheist" publishing frenzy climaxed with Richard Dawkins' The God Delusion, Daniel C. Dennett's Breaking the Spell, Sam Harris's The End of Faith, Christopher Hitchens' god is not Great and subsequent titles; New Atheists repeatedly denounced the Bible as dangerously false, suppressive to scientific inquiry, and as inculcating and promoting problematic, contemptible, even abhorrent moral values. The Genesis 1-11 and 19 Creation, Noah, and Lot narratives persist among the New Atheists' favorite targets. Heretofore there has been (...) no systematic examination of New Atheist treatments of Genesis generally or Genesis 1-11 and 19 particularly. This article scrutinizes leading New Atheist interpretations of Genesis 1-11 and 19 articulated by Richard Dawkins, Daniel C. Dennett, Sam Harris, and Christopher Hitchens. Part one documents these New Atheist renderings of Genesis 1-11 and 19 through the entire corpus of their published books. Part two synthesizes, applies, and extends relevant Genesis 1-11 and 19 scholarship to appraise and respond to the most serious New Atheist allegations, concluding that a more rigorous analysis of Genesis 1-11 and 19 nullifies and potentially reverses New Atheist criticisms. (shrink)

ABSTRACT Controlled human infection (CHI) models have been developed for numerous pathogens in order to better understand disease processes and accelerate drug and vaccine testing. In the past, some researchers conducted highly controversial CHIs with vulnerable populations, including children. Ethical frameworks for CHIs now recommend vulnerable populations be excluded because they cannot consent to high risk research. In this paper we argue that CHI studies span a wide spectrum of benefit and risk, and that some CHI studies may involve minimal (...) risk. The categorical exclusion of children from CHIs therefore departs from the standard approach to evaluating research risks, as international regulations and ethical guidance for pediatric research generally permit non‐beneficial research with low risks. The paradigm in research ethics has also shifted from focusing on protecting vulnerable participants to recognizing that inclusion can be important as a matter of justice, providing new reasons to question this default exclusion of children from CHIs. Recognizing that pediatric CHIs can raise complex ethical issues and are easy to sensationalize in ways that may threaten the public’s trust in research and sponsor institutions, we conclude by describing additional complexities that must be addressed before pediatric CHIs beyond licensed vaccine studies might be ethically acceptable. (shrink)

Currently, there is consensus that community engagement and partnerships are essential to inclusive patient-centered clinical research. Yet there is variation about what it means to do this well an...

Genomic sequencing is becoming more common both in clinical practice and as a routine aspect of much research. Over the last 15 years there has been ongoing discussion about the implications of gen...

As medicine and science advance, new ethical questions emerge. Over time, deliberation and analysis result in a somewhat settled approach to a problem. Often the settled approach is based on group...

Volume 20, Issue 10, October 2020, Page 90-91.

Volume 20, Issue 5, June 2020, Page 31-33.

The capacity to designate a surrogate (CDS) is not simply another kind of medical decision-making capacity (DMC). A patient with DMC can express a preference, understand information relevant to that choice, appreciate the significance of that information for their clinical condition, and reason about their choice in light of their goals and values. In contrast, a patient can possess the CDS even if they cannot appreciate their condition or reason about the relative risks and benefits of their options. Patients who (...) lack DMC for many or most kinds of medical choices may nonetheless possess the CDS, particularly since the complex means-ends reasoning required by DMC is one of the first capacities to be lost in progressive cognitive diseases (eg, Alzheimer’s disease). That is, patients with significant cognitive decline or mental illness may still understand what a surrogate does, express a preference about a potential surrogate, and be able to provide some kind of justification for that selection. Moreover, there are many legitimate and relevant rationales for surrogate selection that are inconsistent with the reasoning criterion of DMC. Unfortunately, many patients are prevented from designating a surrogate if they are judged to lack DMC. When such patients possess the CDS, this practice is ethically wrong, legally dubious and imposes avoidable burdens on healthcare institutions. (shrink)

Significant challenges arise for clinical care teams when a patient or surrogate decision-maker hopes a miracle will occur. This article answers the question, “How should clinical bioethicists respond when a medical decision-maker uses the hope for a miracle to orient her medical decisions?” We argue the ethicist must first understand the complexity of the miracle-invocation. To this end, we provide a taxonomy of miracle-invocations that assist the ethicist in analyzing the invocator's conceptions of God, community, and self. After the ethicist (...) appreciates how these concepts influence the invocator's worldview, she can begin responding to this hope with specific practices. We discuss these practices in detail and offer concrete recommendations for a justified response to the hope for a miracle. (shrink)

The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (shrink)

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both (...) distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)

When an individual facing intractable pain is given an estimate of a few months to live, does hastening death become a viable and legitimate alternative for willing patients? Has the time come for physicians to do away with the traditional notion of healthcare as maintaining or improving physical and mental health, and instead accept their own limitations by facilitating death when requested? The Universities of Oxford and Cambridge held the 2013 Varsity Medical Debate on the motion “This House Would Legalise (...) Assisted Dying”. This article summarises the key arguments developed over the course of the debate. We will explore how assisted dying can affect both the patient and doctor; the nature of consent and limits of autonomy; the effects on society; the viability of a proposed model; and, perhaps most importantly, the potential need for the practice within our current medico-legal framework. (shrink)

De Vries’ article essentially makes what could be called a negative case for state neuro-neutrality: identifying and refuting what he believes are the strongest arguments against it (de Vries 2024)...

Background: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. (...) Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges. (shrink)

The stories in this issue of Narrative Inquiry in Bioethics demonstrate two important things. First these stories explore the space between bodily impairment and the social structures that both enable and constrain the flourishing of those who are differently embodied. The authors of these narratives resist the dominant biomedical interpretation of their impairments, but also demonstrate their dependency upon others—social, medical, or familial others. Second, in writing these narratives, the authors are also engaged in an act of identity formation, which (...) sometimes challenge and sometimes embrace the label of disability. By telling their stories in the middle of the action of their lives— in media res, taking up or resisting the label of disability—they also demonstrate the way in which lives can be lived open to new possibilities and interpretations. (shrink)

Incentivising has shown to improve participation in clinical trials. However, ethical concerns suggest that incentives may be coercive, obscure trial risks and encourage individuals to enrol in cli...

The 2014 Varsity Medical Ethics debate convened upon the motion: “This house believes that genetic information should not be commoditised”. This annual debate between students from the Universities of Oxford and Cambridge, now in its sixth year, provided the starting point for arguments on the subject. The present article brings together and extends many of the arguments put forward during the debate. We explore the circumstances under which genetic material should be considered patentable, the possible effects of this on the (...) research and development of novel therapeutics, and the need for clear guidelines within this rapidly developing field. (shrink)

Clinical research ethics consultation has emerged in the last 15 years as a service to those involved in the conduct of clinical research who face challenging issues for which more than one course of action may be justified. To respond to a growing field and need for opportunities to share knowledge and experience, the Clinical Research Ethics Consultation Collaborative, established in 2014, holds monthly webinars for its 90 members to present their most challenging cases to each other and engage in (...) substantive discussion. Every year, the group selects the four most interesting cases with accompanying commentaries for publication in the American Journal of Bioethics. This timely book brings together these cases and commentaries under a range of common themes for the first time, creating a permanent collection in book format that encourages and supports readers to gain a better understanding of the ethical challenges that they may face, and providing them with a convenient and reflective resource to reference in their own deliberations. Key Features- Comprehensive collection of cases and commentaries, chosen to reflect the range of issues faced by clinical researchers and oversight committees and illustrate the diversity of analysis that can arise. Supplemented by short introductions to each section. Focus on ethical rather than regulatory issues. Essential Reading for graduate students in bioethics and post-doctoral bioethics fellows, and useful for all participants in training grants that are funded by either NIH or NSF Presenting challenging cases to stimulate reflection, the book provides invaluable guidance to clinicians in training and in practice and to investigators, bioethics consultants, regulators, and oversight bodies. (shrink)