Brain–Computer Interface research is an interdisciplinary area of study within Neural Engineering. Recent interest in end-user perspectives has led to an intersection with user-centered design. The goal of user-centered design is to reduce the translational gap between researchers and potential end users. However, while qualitative studies have been conducted with end users of BCI technology, little is known about individual BCI researchers’ experience with and attitudes towards UCD. Given the scientific, financial, and ethical imperatives of UCD, we sought to gain (...) a better understanding of practical and principled considerations for researchers who engage with end users. We conducted a qualitative interview case study with neural engineering researchers at a center dedicated to the creation of BCIs. Our analysis generated five themes common across interviews. The thematic analysis shows that participants identify multiple beneficiaries of their work, including other researchers, clinicians working with devices, device end users, and families and caregivers of device users. Participants value experience with device end users, and personal experience is the most meaningful type of interaction. They welcome end-user input, but are skeptical of limited focus groups and case studies. They also recognize a tension between creating sophisticated devices and developing technology that will meet user needs. Finally, interviewees espouse functional, assistive goals for their technology, but describe uncertainty in what degree of function is “good enough” for individual end users. Based on these results, we offer preliminary recommendations for conducting future UCD studies in BCI and neural engineering. (shrink)

The development of novel neurotechnologies, such as brain-computer interface (BCI) and deep-brain stimulation (DBS), are very promising in improving the welfare and life prospects many people. These include life-changing therapies for medical conditions and enhancements of cognitive, emotional, and moral capacities. Yet there are also numerous moral risks and uncertainties involved in developing novel neurotechnologies. For this reason, the progress of novel neurotechnology research requires that diverse publics place trust in researchers to develop neural interfaces in ways that are overall (...) beneficial to society and responsive to ethical values and concerns. In this article, we argue that researchers and research institutions have a moral responsibility to foster and demonstrate trustworthiness with respect to broader publics whose lives will be affected by their research. Using Annette Baier’s conceptual analysis of trust, which takes competence and good will to be its central components, we propose that practices of ethical reflexivity could play a valuable role in fostering the trustworthiness of individual researchers and research institutions through building and exhibiting their moral competence and good will. By ethical reflexivity, we mean the reflective and discursive activity of articulating, analyzing, and assessing the assumptions and values that might be underlying their ethical actions and projects. Here, we share an ethics dialog tool—called the Scientific Perspectives and Ethics Commitments Survey (or SPECS)—developed by the University of Washington’s Center of Neurotechnology (CNT) Neuroethics Thrust. Ultimately, the aim is to show the promise of ethical reflexivity practices, like SPECS, as a method of enhancing trustworthiness in researchers and their institutions that seek to develop novel neurotechnologies for the overall benefit of society. (shrink)

In this paper, the authors explore the question of whether cognitive enhancement via direct neurostimulation, such as through deep brain stimulation, could be reasonably characterized as a form of transformative experience. This question is inspired by a qualitative study being conducted with people at risk of developing dementia and in intimate relationships with people living with dementia (PLWD). They apply L.A. Paul’s work on transformative experience to the question of cognitive enhancement and explore potential limitations on the kind of claims (...) that can legitimately be made about individual well-being and flourishing, as well as limit the kind of empirical work—including the authors’ own—that can hope to enlighten ethical discourse. In this paper, the authors advance the following theses: (1) it is sometimes reasonable to characterize cognitive enhancement as a transformative experience; (2) the testimonies of people intimately acquainted with dementia may still be relevant to evaluating cognitive enhancement even though cognitive enhancement may be a transformative experience; and (3) qualitative studies may still be useful in the ethical analysis of cognitive enhancement, but special attention may need to be given to how these are conducted and what kind of insights can be drawn from them. (shrink)

One prominent argument against the use of preimplantation genetic diagnosis to select a deaf embryo with the aim of creating a deaf child is that it violates the child’s right to an open future. This paper challenges the open future argument against deaf embryo selection, criticizing its major premise that deafness limits a child’s opportunity range in ways that compromise their future autonomy. I argue that this premise is not justified and is supported by negative presumptions about deaf embodiments that (...) are suspect and in need of further argumentation. First, available interpretations of the open future concept fail to justify the devaluation of deaf traits as inherently autonomy-diminishing. Second, arguing against deaf embryo selection requires demonstrating that a deaf trait generally constrains opportunity ranges independent of social context. But such analyses neglect important social and relational components of autonomy. For these reasons, merely appealing to the child’s right to an open future does not sufficiently support the conclusion that deaf embryo selection is wrong. (shrink)

Climate change has been called “the biggest global health threat of the 21st century.” This chapter outlines some central ethical dimensions of the challenge. It begins by reviewing a few of the major health impacts expected from climate change. It then summarizes some key issues surrounding the ethical importance of health, and of injustices connected to global health inequalities. Finally, the chapter explores a recent concept – planetary health – that aims to environmentalize public health in order to confront climate (...) change more successfully. The basic conclusion is that issues of ethics and justice are central to the public health challenge moving forward. One aspect of this challenge is the need for a more philosophically robust account of the ethics of public health in general, perhaps pursued through a deeper exploration and development of the concept of planetary health. (shrink)

In their article, Sankary et al. (2022) provided important preliminary findings on how research participants exiting from clinical trials engage in decisions related to the removal or post-trial us...

Author Information: Paul Tubig PhD Philosophy Student, University of Washington - Seattle [email protected] Submission Title: The Place of Health in the Liberal Theory of Justice: The purpose of this paper is to articulate the relationship between health and justice. Ethical claims, such as the World Health Organization’s assertion that health is a fundamental human right or that global health inequalities are normative inequities, require a conceptual analysis of the meaning and value of health within a particular framework of justice. Working (...) from the liberal conception of justice as developed by John Rawls, I will argue that the political significance of health is derived from the Rawlsian democratic conception of persons. In developing this thesis, I will first argue against the traditional biomedical approach of defining health within the political context and instead, advocate a conception of health that comprises of a normative dimension to derive moral rights and responsibilities. I will then argue that the most reasonable conception of health as a public value is derived from Rawls’ democratic conception of persons. By understanding the public identity of citizens as persons who possess a specific set of moral powers and highest order moral interests to develop and exercise these powers, we can derive the political significance of health as a necessary background condition to serve these interests. Therefore, structural arrangements should promote public health to the extent that the two moral powers are developed and sustained. Key Words: Justice, Health, Rawls, Liberalism, Healthcare Justice, Political Bioethics. (shrink)