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)

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...

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.

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...

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...

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...

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...

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...

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...

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...

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)

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)

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...