Sophie Gibert

This correspondence piece responds to commentaries on the authors' survey of U.S. bioethicists. The authors address two key questions: the definition of a bioethicist and how bioethics should evolve. They identify four distinct roles bioethicists occupy: researchers, pedagogues, consultants, and advocates/activists. The article examines various aspects of inclusiveness in bioethics - demographic, viewpoint, methodological, and topical - while acknowledging inherent tensions and trade-offs between them. For example, including religiously or geographically diverse voices may conflict with other inclusivity goals. The authors argue that while demographic inclusiveness is crucial, other forms of inclusiveness require careful consideration of trade-offs and empirical research to assess their impacts. They emphasize the need for systematic research on bioethicists' beliefs and reasoning, particularly regarding complex issues like disability and racial health disparities. The piece concludes by calling for continued dialogue and better funding for empirical research on ethical perspectives across different groups.

Bioethicists influence practices and policies in medicine, science, and public health. However, little is known about bioethicists’ views. We recently surveyed 824 U.S. bioethicists on a wide range of ethical issues, including topics related to abortion, medical aid in dying, and resource allocation, among others. We also asked bioethicists about their demographic, religious, academic, and professional backgrounds. We find that bioethicists’ normative commitments predict their views on bioethical issues. We also find that, in important ways, bioethicists’ views do not align with those of the U.S. public: for instance, bioethicists are more likely than members of the public to think abortion is ethically permissible but are less likely to believe compensating organ donors is. Our demographic results indicate the field of bioethics is far less diverse than the U.S. population—less diverse even than other academic disciplines—suggesting far more work needs to be done to build an inclusive field.

Hundreds of millions of rare biospecimens are stored in laboratories and biobanks around the world. Often, the researchers who possess these specimens do not plan to use them, while other researchers limit the scope of their work because they cannot acquire biospecimens that meet their needs. This situation raises an important and underexplored question: how should scientists allocate biospecimens that they do not intend to use? We argue that allocators should aim to maximise the social value of the research enterprise when allocating scarce biospecimens. We provide an ethical framework for assessing the social value of proposed research projects and describe how the framework could be implemented.

Discussions of patient-centred care and patient autonomy in bioethics have tended to focus on the decision-making context and the process of obtaining informed consent, leaving open the question of how patients ought to be counselled in the daily maintenance of their health and management of chronic disease. Patient activation is an increasingly prominent counselling approach and measurement tool that aims to improve patients’ confidence and skills in managing their own health conditions. The strategy, which has received little conceptual or ethical analysis, raises important questions about how clinicians ought to foster confidence and a sense of control in their patients without exposing them to blame, stigma and other harms. In this paper, we describe patient activation, discuss its relationship to personal responsibility, autonomy and health disparities, and make recommendations regarding its use and measurement.