The field of bioethics is calling for a new generation of scholars equipped with the normative, empirical, and practical knowledge and expertise to prioritize equity concerns largely underrepresent...

In their intriguing article “Bioethics and the Moral Authority of Experience,” Nelson and colleagues (2023) provide important insight into an important ethical problem. We frequently demand that th...

Nelson et al.(2023) argue that the inclusion of personal experience in bioethical debates has significant benefits and liabilities, illustrating their claim with two examples: unproven medical treatments and disability bioethics. We believe that the benefits of including personal experience in disability bioethics far exceed its liabilities. The absence of participants with relevant experience impoverishes and biases bioethical debates, while the biases risked by their inclusion are hardly unique to personal experiences and are readily mitigated.

Given that biases can distort bioethics work, it has received surprisingly little and fragmented attention compared to in other fields of research. This article provides an overview of potentially relevant biases in bioethics, such as cognitive biases, affective biases, imperatives, and moral biases. Special attention is given to moral biases, which are discussed in terms of (1) Framings, (2) Moral theory bias, (3) Analysis bias, (4) Argumentation bias, and (5) Decision bias. While the overview is not exhaustive and the taxonomy (...) by no means is absolute, it provides initial guidance with respect to assessing the relevance of various biases for specific kinds of bioethics work. One reason why we should identify and address biases in bioethics is that it can help us assess and improve the quality of bioethics work. (shrink)

The concept of personhood has been central to bioethics debates about abortion, the treatment of patients in a vegetative or minimally conscious states, as well as patients with advanced dementia. More recently, the concept has been employed to think about new questions related to human-brain organoids, artificial intelligence, uploaded minds, human-animal chimeras, and human embryos, to name a few. A common move has been to ask what these entities have in common with persons (in the normative sense), and then draw (...) conclusions about what we do (or do not) owe them. This paper argues that at best the concept of “personhood” is unhelpful to much of bioethics today and at worst it is harmful and pernicious. I suggest that we (bioethicists) stop using the concept of personhood and instead ask normative questions more directly (e.g., how ought we to treat this being and why?) and use other philosophical concepts (e.g., interests, sentience, recognition respect) to help us answer them. It is time for bioethics to end talk about personhood. (shrink)

Disease radically changes the life of many people and satisfies formal criteria for being a transformative experience. According to the influential philosophy of Paul, transformative experiences undermine traditional criteria for rational decision-making. Thus, the transformative experience of disease can challenge basic principles and rules in medical ethics, such as patient autonomy and informed consent. This article applies Paul’s theory of transformative experience and its expansion by Carel and Kidd to investigate the implications for medical ethics. It leads to the very (...) uncomfortable conclusion that disease involves transformative experiences in ways that can reduce people’s rational decision-making ability and undermine the basic principle of respect for autonomy and the moral rule of informed consent. While such cases are limited, they are crucial for medical ethics and health policy and deserve more attention and further scrutiny. (shrink)

IRBs often face dueling values in research: their historically grounded mission to protect research participants from harm conflicts with more recent attention to the importance of including underr...

This excellent article (Nelson et al. 2023) clarifies the difficulties of incorporating diverse voices and those who speak of their own experience, into bioethics, a field that aspires to be object...

In “Bioethics and the Moral Authority of Experience,” Ryan Nelson et al. (2022) argue that personal experience can simultaneously be an asset and a liability in the practice of bioethics and medici...

Bioethics has dedicated itself to exploring and defending both reasons for and against certain aspects of clinical care, biomedical research and health policy, including what decisions must be made, who should make them, and how they should be made. In pediatrics, it’s widely acknowledged that parents’ reasons may matter pragmatically; attending to parents’ reasons is important if we want to work with families. Yet the conventional view in pediatric ethics is that parents’ reasons are irrelevant to whether a decision is (...) permissible or impermissible according to accepted ethical standards. In this paper, we explore whether parents’ reasons matter ethically and, if so, in what way and for whom. First, we clarify what we mean by ‘reasons.’ Second, we provide an overview of how reasons are typically treated in medical decision-making and pediatric ethics. Third, we analyze a hypothetical pediatric case to illustrate how changing reasons can transform ethical analyses, including by contributing to where and how clinicians and ethicists draw the boundaries intrinsic to common pediatric ethical frameworks. We push back against the conventional view and argue that parents’ reasons matter ethically in several ways. We call for further research on the role of parents’ reasons in clinical ethics deliberation. (shrink)

In “What are Humans Doing in the Loop?” Salloch and Eriksen (2024) argue for a collaborative decision-making approach to using machine learning-based AI decisional support systems in medicine, rece...

In their article, Nelson et al. (2023) raise concerns regarding the “paradox of experience” as it relates to the practice of bioethics. They argue that while experience provides individuals with in...

Nelson et al. (2023) have deftly articulated a “paradox of experience” that applies to most if not all stakeholder engagement efforts in bioethics. Eliciting the perspectives of people with first-h...

Nelson et al. (2023) make a unique contribution, raising key questions and considerations about the value of lived experiences as they pertain to normative debates in bioethics. The authors grapple...

The target article (Nelson et al. 2023) offers a valuable contribution to the “paradox of experience,” which was illustrated by using examples about access to unproven medical products and disabili...

Neurotechnological advancement hinges on cohesive collaboration among diverse stakeholders, all unified in improving user quality of life. However, identifying the specific individuals who should q...