The following abstracts were selected by AJOB-Neuroscience judges as the best submitted to the International Neuroethics Society 2021 Annual Meeting.

As the new Editor-in-Chief (EiC) of the AJOB Neuroscience, I am aware that I have some very large shoes to fill. Paul Root Wolpe, who established the quality of the journal and served in that posit...

Main Response Topics ? Introduction ? Open display and public evaluation ? Publicity versus patient privacy ? Facial tissue donation ? Validity of Louisville Instrument for Risk Acceptance ? Patients' understanding of risk ? Face versus hand transplantation ? Rejection rates/risks ? Patient compliance ? Exit strategy ? Functional recovery ? Societietal implications ? Psychological implications ? Conclusion: Uncertainty likely to persist.

The AJOB Neuroscience insight article, “A Cross-Cultural Neuroethics View on the Language of Disability,” gathers social science empirical data detailing the words that structure the human variatio...

This special issue of AJOB Neuroscience explores a number of ethical questions emerging from some of the most recent results of research on consciousness, including its moral interpretation, its te...

In his 2023 AJOB article, Jorge Fabiano claims that a safety framework is needed to guard against the potential negative consequences of moral enhancement. He describes prudential desiderata that constitute the nodes of his proposed safety framework, ultimately arguing that a virtue theory, as opposed to a non-virtue based theory such as a consequentialist or deontological theory, hues closest to these desiderata. In this open peer commentary (OPC), I argue that Fabiano's trait-based analysis of enhancement-related changes, while illuminating, necessarily (...) commits us to a virtue theoretical framework. (shrink)

In her target article “Shared health governance” (AJOB 11(7): 32-45, 2011) and in her book Health and Social Justice (2009), Jennifer Prah Ruger defends an original model of governance dubbed “Shared Health Governance” (SHG). This model borrows elements from many other models of governance, and one may wonder what is the secret sauce that holds together these diverse ingredients. In response, Ruger would perhaps ultimately turn to public moral norms. My comment raises some concerns about the function and content (...) of these norms in her model and their connection to her claims about shared sovereignty within SHG. (shrink)

Events in the US in 2020 have laid bare the reality that racism and its effects continue to take a heavy toll on the lives of Black Americans. The three articles in this issue of AJOB each provide...

The Neuroethics Affinity Group of the American Society for Bioethics and Humanities met for the third time in October 2007 to review progress in the field of neuroethics and consider high-impact priorities for the future. Closely aligned with ASBH's own goals of recruiting junior scholars to bioethics and mentoring them to successful careers, the Neuroethics Affinity Group placed a call for new ideas to be presented at the Group meeting, specifically by junior attendees. One group responded with the idea to (...) probe a new direction for neuroethics focused on the neuroscience of gender differences. In the spirit of full disclosure, two of the authors are a student and fellow of the program I formerly directed at Stanford University. The third is junior faculty there. The intellectual ownership of the ideas in the report below, however, are entirely theirs. Like lit torches in a juggling act, there are many directions this project can go. The report is a snapshot of these authors' first iteration of the concept of women's neuroethics. Many thanks are extended to participants of the ASBH Neuroethics Affinity Group meeting whose enthusiasm and feedback was immensely helpful in shaping the concept and moving it ahead. - Judy Illes, Editor AJOB-Neuroscience. (shrink)

A peer commentary on an AJOB article by Kyle Fritz called "Unjustified Asymmetry: Positive Claims of Conscience and Heartbeat Bills.".

A provocative Target Article in this issue of AJOB proposes a new approach to decision-making for babies born in the “gray-zone” at the margins of viability. Titled “Postponed Withholding: balanced...

The authors offer their sincere thanks to all of the commentators for taking the time to comment on our work ; one of the advantages of the AJOB format is immediate feedback,...

The recently published BRAIN 2.0 Neuroethics Report offers a very helpful overview of the possible ethical, social, philosophical, and legal issues raised by neuroscience in the context of BRAIN’s research priorities thus contributing to the attempt to develop ethically sound neuroscience. In this article, we turn to a running theme of the document: the need for an ethical framework for the BRAIN Initiative and for further integration of neuroethics and neuroscience. We assess some of the issues raised and provide an (...) explanation of how we have addressed them in the Human Brain Project. We offer our experience in the HBP as a potential contribution to the international debate about neuroethics in the big brain initiatives. Our hope is that among other things, the type of exchange proposed by this AJOB special issue will prove productive in further identifying and discussing the issues and in inspiring appropriate solutions. (shrink)

The following abstracts were selected by AJOB-Neuroscience judges as the best submitted to the International Neuroethics Society 2024 Annual Meeting based on merit, novelty, relevance, and contribution to the field of neuroethics. The scores were tallied and the top abstracts appear in alphabetical order by first author surname.

The seven articles included in the AJOB Neuroscience special issue map important ethical issues that have and will continue to emerge with advances in neuroscience and neurotechnology. A critical c...

Open Peer Commentary on P. Zawadzki and A. K. Adamczyk's target article in AJOB Neuroscience on the potential of optogenetics for memory modification. I argue for a radically pluralistic understanding of the notion of authenticity, and highlight the need to further clarify the specific nature of the authors' concern about authenticity, as well as its policy implications.

The article by Conrad et al. (AJOB Neuroscience, 2019, 10:1) does not take into account another, still hypothetical, procedure for cognitive enhancement (CE) which would be appropriate to consider in the surveys, i.e. the possibility to genetically enhance the cognitive abilities of a future individual using genome editing techniques. In this case, the conclusions of the article in the context of the “self-others difference” and “safety/naturalness” would be questioned. In fact, the results of the hypothetical surveys with the variant (...) “genome editing” could be significantly different from those obtained in the survey proposed by the authors: an individual would decide not for himself, but for the CE in a future child. In light of these considerations, we hold that the article highlights just the attitudes toward the principle of autonomy and redistributive justice; however, by introducing the new hypothetical scenario of CE with genome editing the attitudes toward the principles of beneficence and non-instrumentalisation could also be appreciated. Special attention to future generations is necessary to inform potential CE public policy, though using genome editing to enhance cognition abilities is just a future hypothetical perspective. (shrink)

The timing of this special issue of AJOB probing whether public engagement (PE)1 might help achieve equity in genomics is no coincidence. While many issues discussed by the authors are not entirely...

Much neuroethics literature concludes with a set of normative recommendations. While these recommendations can be a helpful way of summarizing a proposal for a future direction, some have recently argued that ethics scholarship has devoted insufficient attention to considerations of audience and real-world applications. To date, however, while scholars have conducted topic analyses of neuroethics literature, to our knowledge no study has evaluated who neuroethics scholarship addresses and what it recommends. The objective of the present study therefore was to provide (...) a preliminary characterization of recommendations offered in neuroethics scholarship and an assessment of their target audiences. Rather than attempting to demarcate what constitutes “neuroethics scholarship,” we analyzed text that authors’ had self-identified as being neuroethics-related: abstracts presented at the International Neuroethics Society (INS) annual meetings and published as top abstracts in AJOB Neuroscience in the last decade (2011–2020). We found that a majority of abstracts utilized conceptual methods (62.2%) and provided conceptual recommendations (68%). Roughly 77% of all abstracts did not explicitly address a target audience, yet nearly all of these were implicitly directed at other scholars. The remainder specified a target audience of scholars (12.2%), regulators (6.7%), healthcare providers (6.7%) and industry (2.6%). Only a subset of abstracts provided practical or policy recommendations (19.7%). Of those, the majority (61.5%) did not specify a target audience. Among the subset with actionable recommendations, a clarification of target audience may help increase the impact. (shrink)

The recent article “The Prospects of Artificial Consciousness: Ethical Dimensions and Concerns” by Elisabeth Hildt (2023) in the AJOB Neuroscience presents a thorough examination of the ethical imp...

The target article by Camisha Russell continues the important discussion about race, racism and bioethics that has appeared in AJOB for the past few years. Russell critically examines how un...

Photo by Karl Raymund Catabas on Unsplash “After Buddha was dead, they still showed his shadow in a cave for centuries – a tremendous, gruesome shadow. God is dead; but given the way people are, there may still for millennia be caves in which they show his shadow. – And we – we must still defeat his shadow as well!” – Friedrich Nietzsche[1] INTRODUCTION Friedrich Nietzsche famously declared that “God is dead!”[2] but lamented that his contemporaries remained living in the (...) shadow of God. For Nietzsche, the morality of his time was still based in the Christian tradition, even though faith in God was waning. Bioethics lives under a similar shadow: the shadow of Enlightenment Era-rationalism. Bioethics curricula focus on principles derived from Kantian deontology and utilitarianism. The allure of maintaining a moral framework that provides a rational method that can be handily applied to any situation remains strong. The principlist approach advanced by Tom Beauchamp and James Childress is taught to nearly all medical students in the United States,[3] and is essentially the canonical ethical framework of bioethics. In this model, the principle of autonomy is Kantian in nature, and the principles of beneficence and non-maleficence are utilitarian in nature.[4] Moreover, the presented framework is an approach that, when applied rationally to any healthcare scenario, will yield an outcome “considered moral.”[5] This reflects a faulty conception of philosophy that plagues much of bioethics, wherein the only contribution of philosophy pertinent to bioethics is moral philosophy elucidated by European thinkers in the Enlightenment Era. The landscape of moral philosophy has evolved significantly from the 18th century. However, the bioethical world has not kept up with the philosophical world, remaining instead in the shadow of antiquated moral thinking. Also lacking in bioethics are other disciplines of philosophy, such as philosophy of language, existentialism, and aesthetics, which are often given no consideration at all. The inclusion of both modern moral philosophy and other philosophical fields is necessary if bioethics is to survive its transition into modernity. l. The Shadow of Enlightenment Enlightenment Era philosophers such as Immanuel Kant argued that one need only employ reason to obtain knowledge; emotion bore no relevance when determining ethical behavior. Kant’s moral theories thus privileged a duty to act according to moral imperatives over feelings. Other Enlightenment Era philosophers such as John Locke developed systems that attempted to quantify human goods and human ills. This quantification potentially reduces human welfare and suffering to utility. Today, in the world of philosophy, such a “neutral analysis,” as Cora Diamond noted, is “dead or moribund.”[6] Bernard Williams remarked that such moral philosophy is “empty and boring,”[7] and G. E. M. Anscombe stated that it “no longer generally survives.”[8] And yet, just as the atheists in Nietzsche’s world dwelt in the moral code of a dead God, bioethicists still pursue a unified moral system that takes an input, applies some moral rules, and generates a moral outcome, like the four principles approach that Beauchamp and Childress laid out.[9] Some detractors of principlism take issue with their approach for not being unified enough and want to replace it with a procedural framework that is even more systematic and complicated. They argue that the resulting moral framework would be a “comprehensive decision procedure for arriving at answers”[10] that retains the “impartiality that is an essential part of morality.”[11] The shadow of rationalist morality has caused bioethical decision making to become detached and rigid when bioethics should concern itself with the humans whose lives it affects. A rational, divorced-from-emotion way of thinking ultimately fails to yield satisfactory results when decisions are made by and for emotional beings. Dr. Paul Farmer, among others, championed the idea that bioethics should be de-philosophized, as philosophy, cold and calculated, fails to adequately respond to the realities of those worst off.[12] Instead, Dr. Farmer emphasized the inclusion of the social sciences, like sociology and anthropology, in bioethics. Undoubtedly, Dr. Farmer was on the right track; bioethics should certainly engage directly with the people whom its decisions involve. If the narrow band of moral philosophy currently found in bioethics – that of stringent rationalism – were all that philosophy had to offer, I, too, would advocate for a de-philosophization. Ludwig Wittgenstein notes that to attempt to capture the complexity of moral thinking in a manner that employs reason alone and casts aside emotion is a “hopeless task,” like reconstructing a sharp image “from a blurred one.”[13] Unfortunately, bioethics is mired in the remnants of this hopeless task. To Dr. Farmer, the dominant moral framework was too restrictive and was unresponsive to the social and humanitarian needs of those whom bioethics is meant to help. As such, he wished to free bioethics from the shadow of a morality derived from rationalist thinkers. ll. Beyond Rationalism Like Nietzsche, who tried to resolve Europe’s post-religion vacuum by providing his society with a new way to live, Dr. Farmer wanted to replace the rationalist philosophy upon which bioethics was built with a “resocialization” of the field.[14] I agree with Dr. Farmer’s call for resocialization, as well as his denouncement of philosophy as it exists in bioethics. Evaluating risks and benefits along a predetermined array of moral principles is far too rigid and impersonal to guide what are often the most important decisions one will make. For Dr. Farmer, the most needed change was restoring the social element of bioethics. However, in advocating for this resocialization, Dr. Farmer casts philosophy as the antithesis of social science, noting that “few would regard philosophy … as a socializing discipline.”[15] I disagree. Rationalist moral philosophy may be lacking in socializing force, but there are other fields of philosophy that are responsive to our social reality. Rather than de-philosophizing bioethics, it makes more sense to replace the antisocial philosophies predominant in bioethics with prosocial philosophies better suited to it. Of course, the contribution of philosophy to bioethics is more than moral theories from the Enlightenment Era. There are more recent philosophical contributions from outside the field of moral philosophy that have roused bioethical interest. Jennifer Blumenthal-Barby, et al., argue for philosophy’s continued place in bioethics, citing Derek Parfit’s “non-identity problem,” which altered the landscape of reproductive ethics, and David Chalmers’ contributions to philosophy of consciousness, which have implications for the moral status of brain organoids.[16] Still, these are narrow applications of philosophy to highly specialized areas of bioethics, which not all bioethicists are inclined to delve into. Philosophy in bioethics should not be confined to niche applications in specialist fields but should influence all bioethical thought. Fortunately, there remains untapped a wealth of philosophical disciplines that pertains to exactly this. Philosophy of language investigates the nature of meaning and understanding in communication, which is a necessary social action. Successfully deciphering and conveying moral values in discourse is a bioethicist’s bread and butter, as is resolving disagreements and reaching agreements. Indeed, it is often the case that miscommunication lies at the root of an impasse between a doctor and a patient. An understanding of the nature of the disagreement would help resolve the conflict, as different types of disagreements require different interventions for resolution. For instance, a “substantive disagreement,”[17] in which two parties use the same terms in the same ways and have a fundamental disagreement on which outcome is more desirable, can be resolved only if one party yields to the other. On the other hand, a “merely verbal dispute,”[18] in which two parties use the same terms to represent entirely different concepts and values, requires standardization of terminological usage for its resolution. As such, no one can overstate the moral importance of successful communication in bioethics, and an exploration of language itself would prove invaluable to a bioethicist’s training. Existentialism is another subset of philosophy that acknowledges the social nature of human existence, noting that one’s being in the universe is concomitant with the existence of others sharing the same universe.[19] Thus, there is the recognition that whatever existence is, it is not complete without the existence of others. With this as a starting point, existentialists examined how to live meaningfully with others in this world. Since ethics crucially involves others, it is no surprise that existentialists pondered how to live moral lives. Existentialist conceptions of morality did not revolve around acting in accordance with a set of rules, but rather, recognized individual freedom in choosing how to act and emphasized acting authentically. In this vein, bioethicists should commit to doing what is right rather than committing to applying a set of principles. Existentialism, while part of the broader bioethics literature, is less common throughout bioethics curricula and deserves more prominence. Martin Heidegger, for instance, emphasized the difference between two types of thinking: “calculative thinking” and “meditative thinking.” Heidegger characterizes calculative thinking as a computation, wherein from some given starting conditions “definite results”[20] are determined, and contrasts this with meditative thinking, which he describes as “thinking which contemplates the meaning which reigns in everything that is.”[21] Heidegger was critical of the pervasiveness of calculative thinking, seeing it as the “ground of thoughtlessness,”[22] in which we only relate to the world in a meaningless, mechanical way. This is the emphasized type of thinking in rationalist conceptions of morality popular in bioethics; from a set of starting conditions, a series of rules are applied, and a moral outcome is calculated. Such a technique, however, discounts the personal meaning individuals place on the aspects of their lives relevant to their decision making, as well as the meaning in committing to doing what is right. Under calculative thinking, such a commitment is reduced to rote rule-following. A turn to meditative thinking would ensure that bioethical decisions comport with living meaningful lives. Even aesthetics, a discipline devoted to examining beauty and taste,[23] has a place in bioethics. Just as the viewing of a painting, the listening of a song, or the reading of a book elicits an effective response, hearing a patient’s story leaves an emotional imprint. The recounting of a traumatic moment imparts sadness, and a joyous occasion begets joy in the listener as well. As acknowledged in the field of everyday aesthetics, these aesthetic experiences often spur us to act:[24] The unsightly appearance of a polluted riverbank drives us to remove the trash; the presence of sorrow in one’s life drives us to ameliorate it. To be mindful of aesthetic experiences and allow them to affect us emotionally is paramount to the motivation of a bioethicist to serve the patient, not out of an obligation to a job description, but out of a desire to truly avail the patient of their anguish. For example, the new field of narrative medicine utilizes critical reading and literary techniques to train clinicians and bioethicists in emotional understanding and listening skills that stress the social aspects of medicine beyond rational analysis and decision making. CONCLUSION Dr. Farmer is absolutely correct; bioethics is in dire need of resocialization. It should not be the case that the justification for a moral action is essentially that “the rules say so,” or that simply by teaching such rules to medical students, the very act of making bioethical decisions that diverge from those determined by principles can be seen as an act of “bad faith … hubris or, worse, malpractice.”[25] As bioethicists are coming to realize, the rationalist philosophical traditions that bioethics was founded upon are past their expiry, and the time for change is now. Indeed, as Dr. Farmer urges, “socializing disciplines” like anthropology, history, political economy, and sociology are necessary to humanize the field of bioethics.[26] So too, however, can philosophy be a socializing discipline, if we know where to look. Bioethics should evolve. Its new goal should be to focus on meaningful human relationships, and to phase out rigid, impersonal modes of moral thinking. The limited sampling of unsatisfying moral theories from hundreds of years ago leaves many bioethics students cold, and it is easy to see why bioethicists are ready to part ways with philosophy. I believe this is a move in the wrong direction; there is a place for philosophy in the future of bioethics. Just as bioethics needs a resocialization, it is also needs of a re-philosophization. These enrichments complement one another. There is more to bioethics than mechanically determining the right course of action in a healthcare setting. Bioethics engages with the most ancient of philosophical questions: questions of what makes human existence meaningful, what makes us who we are, how we want to relate to others, how and why we feel, what our place in the world is, how we can communicate what we think, and why our moral intuitions are so compelling. We would be remiss if we did not begin to investigate additional contributions to morality from a wider range of philosophies that try to provide answers to such questions, as they offer a richness to moral thinking that cannot be gleaned from traditional bioethical approaches alone. - [1] Friedrich Wilhelm Nietzsche, The Gay Science: With a Prelude in German Rhymes and an Appendix of Songs, ed. Bernard Williams, Josefine Nauckhoff, and Adrian Del Caro, Cambridge Texts in the History of Philosophy, 109. [2] Nietzsche, 120. [3] Daniel C O’Brien, “Medical Ethics as Taught and as Practiced: Principlism, Narrative Ethics, and the Case of Living Donor Liver Transplantation,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 47, no. 1 : 97, https://doi.org/10.1093/jmp/jhab039. [4] K. D. Clouser and B. Gert, “A Critique of Principlism,” Journal of Medicine and Philosophy 15, no. 2 : 219–36, https://doi.org/10.1093/jmp/15.2.219. [5] O’Brien, “Medical Ethics as Taught and as Practiced,” 97. [6] Cora Diamond, “Having a Rough Story about What Moral Philosophy Is,” New Literary History 15, no. 1 : 168, https://doi.org/10.2307/468998. [7] Bernard Williams, Morality: An Introduction to Ethics, Canto ed, xvii. [8] G. E. M. Anscombe, “Modern Moral Philosophy,” Philosophy 33, no. 124 : 1, https://doi.org/10.1017/S0031819100037943. [9] Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 7th ed, 13. [10] Clouser and Gert, 233. [11] Clouser and Gert, “A Critique of Principlism,” 235. [12] Paul Farmer and Nicole Gastineau Campos, “Rethinking Medical Ethics: A View from Below,” Developing World Bioethics 4, no. 1 : 17–41, https://doi.org/10.1111/j.1471-8731.2004.00065.x. [13] Ludwig Wittgenstein, Philosophical Investigations, ed. Joachim Schulte, trans. P. M. S. Hacker, 4th edition, 40. [14] Farmer and Campos, “Rethinking Medical Ethics,” 20. [15] Farmer and Campos, 20. [16] Jennifer Blumenthal-Barby et al., “The Place of Philosophy in Bioethics Today,” The American Journal of Bioethics: AJOB, June 30, 2021, 3–5, https://doi.org/10.1080/15265161.2021.1940355. [17] Brendan Balcerak Jackson, “Verbal Disputes and Substantiveness,” Erkenntnis 79, no. S1 : 31–54, https://doi.org/10.1007/s10670-013-9444-5. [18] C. S. I. Jenkins, “Merely Verbal Disputes,” Erkenntnis 79, no. 1 : 11–30, https://doi.org/10.1007/s10670-013-9443-6. [19] Steven Crowell, “Existentialism,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta, Summer 2020, https://plato.stanford.edu/archives/sum2020/entries/existentialism/; Anita Avramides, “Other Minds,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta, Winter 2020, https://plato.stanford.edu/archives/win2020/entries/other-minds/. [20] Martin Heidegger, Discourse on Thinking, Harper Torchbooks, 46. [21] Heidegger, 46. [22] Heidegger, 45. [23] Nick Zangwill, “Aesthetic Judgment,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta, Winter 2021, https://plato.stanford.edu/archives/win2021/entries/aesthetic-judgment/. [24] Yuriko Saito, “Aesthetics of the Everyday,” in The Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta, Spring 2021, https://plato.stanford.edu/archives/spr2021/entries/aesthetics-of-everyday/. [25] O’Brien, “Medical Ethics as Taught and as Practiced,” 112. [26] Farmer and Campos, “Rethinking Medical Ethics,” 20. (shrink)

Commentary about the role of AI in bioethics for the 10th anniversary issue of AJOB: Empirical Bioethics.

Peer commentary on: Goering, S., Klein, E., Dougherty, D. D., & Widge, A. S. (2017). Staying in the loop: Relational agency and identity in next-generation DBS for psychiatry. AJOB Neuroscience, 8(2), 59-70.

Does normothermic regional perfusion (NRP) resurrect the dead? That was the question I asked in one of the target articles published in the special issue of The American Journal of Bioethics (AJOB)...

In this commentary on an article by Jennifer Blumenthal-Barby (AJOB 16:5-15, 2016), we discuss how external influences on decisions affect personal autonomy. Specifically, we introduce the idea of “pre-authorization” as an evaluative stance by which an individual gives a certain agent preferential access to influencing her decision-making processes. Influences arising from pre-authorized agents may then be seen as promoting, rather than infringing upon, autonomy. While the idea that an external influence can be autonomy-promoting may be inconsistent with individualistic conceptions (...) of autonomy, it aligns well with more relational conceptions that recognize the social milieu in which decisions are made. We suggest that pre-authorization provides a framework for thinking about how relational accounts of autonomy might work mechanistically. (shrink)

A significant goal of neuroethics is to offer neuroscientists, health care providers, law- and policy-makers and others, ways of thinking and acting on matters relevant to brain health and conditions that affect the central nervous system. This goal and related calls to action have been derived from theory or empirical work and bring different levels of normative force. To bring the latter in particular to the foreground of discussion, we explored for this Policy Forum different calls to action as they (...) are associated with chosen terminology, the definitions of terms, origins to which they are benchmarked, locations in text, and targeted audiences. We find variability on all of these factors as they appear in the original foundational journals for neuroethics: AJOB Neuroscience and Neuroethics. We recommend that for a field whose very existence relies on uptake of advice, better consistency of language will improve credibility, acceptance, and implementation. (shrink)

The target articles in this “Roe v. Wade” special issue of AJOB rightly point to multiple ethical harms of an imminent end to full federal protection for legal abortion in the United States, p...

A recent target article in the American Journal of Bioethics (AJOB) considered the right of transgender (trans) children to access pubertal suppression (Priest 2019). We were concerned by publicati...

We provide empirical evidence that people who believe in dualism are more likely to be uncomfortable with Deep Brain Stimulation (DBS) and to view it as threatening to their identity, humanity, or self. It is (neurocentric) materialists—who think the mind just is the brain—that are less inclined to fear DBS or to see it as threatening. We suggest various possible reasons for this connection. The inspiration for this brief report is a target article that addresses this issue from a theoretical (...) perspective. (shrink)

Background Families whose child has unexplained intellectual or developmental differences often hope that a genetic diagnosis will lower barriers to community-based therapeutic and support services. However, there is little known about efforts to mobilize genetic information outside the clinic or how socioeconomic disadvantage shapes and constrains outcomes.Methods We conducted an ethnographic study with predominantly socioeconomically disadvantaged families enrolled in a multi-year genomics research study, including clinic observations and in-depth interviews in English and Spanish at multiple time points. Coding and thematic (...) development were used to collaboratively interpret fieldnotes and transcripts.Results Thirty-two families participated. Themes included familial expectations that a genetic diagnosis could be translated into information, understanding, and assistance to improve the quality of a child’s day-to-day life. After sequencing, however, genetic information was not readily converted into improved access to services beyond the clinic, with families often struggling to use a genetic diagnosis to advocate for their child.Conclusion Families’ ability to use a genetic diagnosis as an effective advocacy tool beyond the clinic was limited by the knowledge and resources available to them, and by the eligibility criteria used by therapeutic service providers’ – which focused on clinical diagnosis and functional criteria more than etiologic information. All families undertaking genomic testing, particularly those who are disadvantaged, need additional support to understand the limits and potential benefits of genetic information beyond the clinic. (shrink)

Background: While employers are increasingly considering and implementing COVID-19 vaccination requirements, little is known about the reasons offered by employees seeking religious exemptions.Methods: We conducted a mixed methods analysis of all the requests for religious exemptions submitted during the initial implementation of a COVID-19 vaccination requirement at a single academic medical center in the United States.Results: Five hundred sixty-five (3.4%) employees requested religious exemptions. At least 305 (54.0%) requesters had job titles suggesting that they had direct patient contact. Four hundred (...) ninety-nine (88.3%) of requesters self-identified as Christian, of whom 120 (21.2%) identified as Roman Catholic. Requesters offered 0 to 8 (mean 2.7) categories of reasons for their request. The most frequently stated reasons pertained to the use of fetal cell lines in vaccine development and manufacturing (382, 67.6%), interest in maintaining purity (221, 39.1%), or belief in divine healing (172, 30.4%). Some requesters also volunteered evidence of the sincerity of their beliefs including examples of their religious practices (116, 20.5%), other practices (66, 11.7%), and emotional states (32, 5.7%). One hundred fifty-two applications (26.9%) contained text copied without attribution, primarily from sample religious exemption request letters available on the Internet.Conclusions: Most requesters focused on the use of fetal cell lines in the development or manufacturing of the vaccines as the justification for their request. The development of vaccines that are not reliant on fetal cell lines may increase vaccination rates. Understanding reasons for religious exemption requests may inform vaccine education and vaccination policies. (shrink)

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

Background The American Society for Bioethics and Humanities (ASBH), a professional organization that certifies ethics consultants who pass the qualifying examination, published standards for the conduct of ethics consultations (EC). A national survey of adult hospital ethics consultants identified adherence to these standards, but no assessment of pediatric hospitals’ adherence has been done.Methods In this cross-sectional study, a national questionnaire was distributed electronically in 2022 to pediatric ethics consultants at children’s hospitals, collecting information about adherence to the ASBH standards. Hospital (...) characteristics were extracted from the Children’s Hospital Association Annual Benchmark Report. Quantitative analysis included descriptive statistics to assess adherence and analyses of variance to investigate associations between hospital characteristics and the time taken to respond to consultations.Results Of the 181 eligible pediatric hospitals, we received 104 completed surveys (57%) from 45 states. Pediatric EC have similar adherence rates to ASBH standards as adult hospitals. High-adherence (>75%) areas included having an expert available for EC and permitting any staff member to request EC. Low-adherence areas included having comprehensive policies covering all aspects of EC activities, having a response plan for egregious violations, and the elicitation of formal feedback after EC. There is an increased average response time for ethics consultation services in smaller pediatric hospitals and church-operated hospitals.Conclusions Pediatric hospitals overall have moderate adherence to the ASBH EC standards, with the highest rates occurring for standards that are shared by the American Academy of Pediatrics. Additional research into the barriers to standard adherence and the effectiveness of standards is warranted with emphasis on the impact of adherence on consultation quality. (shrink)

Background There are several psychosocial and ethical issues surrounding the decision to be a living kidney donor. The present study aimed to determine the perceptions of psychosocial and ethical issues that living kidney donors may have, and analyze their psychological characteristics.Methods Face-to-face semi-structured interviews were conducted with 15 donors. Thematic analysis was then performed to categorize the thematic elements of the transcripts. All procedures were approved by the relevant review board.Results Four main categories were identified: Awareness of family dynamics, barriers (...) to a proper understanding, contrasting psychological effects of recipient presence in clinical practice, insufficient information explained in informed consent.Conclusion Donors felt that they took on the “role as a care giver” for the recipient and were less aware of themselves as patients. This is a new concept that has not been shown in previous studies. Donors exist within the recipient and family, and the range of their autonomy may go beyond the traditional concept of autonomy and be rooted in relational autonomy. This study suggested that medical treatment in the presence of the recipient promotes the relational autonomy of the donor. (shrink)