Ally Smith

Background One of the central goals of recent neuroethics research is to understand the ethical implications that rapidly evolving neuroscientific discoveries and technologies may have for research participants, patients, and society. From adequate informed consent and post-trial obligations to impacts on agency and disability justice, neuroethicists have argued that the unique clinical, investigative, and financial context of these advances raises distinct and urgent ethical challenges. While much of the ethics work has been advanced through soliciting the perspectives of patients, participants, and the broader public, comparatively little work has explored the experiences of researchers who lead these studies, what ethical issues they face, and how they navigate them. Compared to other parties, investigators are uniquely situated with respect to both their agency and experience. They are the only stakeholders who experience ethical issues before, during, and after a study, and who interact with industry, universities, federal agencies, funders, IRBs, medical centers, ethicists, patients, participants, and caregivers. They are also in a position to determine, with relative authority, the designs of their studies and the solutions to ethical issues as they arise. Understanding researcher experiences is thus a critical part of recognizing, navigating, and mitigating the ethical issues that arise in cutting edge brain research. Methods We conducted a qualitative study with 14 NIH BRAIN Initiative-funded investigators, whose research spans 11 institutions and which involves various kinds of invasive brain research with humans. Interviewees were asked about their experiences conducting research and responding to ethical challenges, navigating academic and commercial institutions, interacting with patients, participants, and other researchers, and engaging with neuroethicists. Interviews were coded and analyzed utilizing an inductive and semantic reflexive thematic analysis. Results Analyses of interviews yielded two main themes: (i) the difficulty of navigating complex conflicts of interest and (ii) the need for collaboration, community, and participation in neuroethics deliberation. Researchers describe facing multiple underappreciated structural and interpersonal conflicts of interest (including those from research funding, team structure, data collection and sharing obligations, commercialization, innovation, and the boundaries between research and care), as well as the need for increased engagement with participants, ethicists, and each other. Conclusions Drawing on this data, we argue that navigating ethical issues in cutting edge brain research requires a shift from focusing on promoting ethical guidelines to also promoting neuroethical competencies. More specifically, we argue that integrating the philosophical discipline of virtue ethics—which focuses on developing moral sensitivities, practical reasoning skills, and other ethical competencies—could provide better tools for addressing the ethical issues researchers face than regulations and rules alone. We conclude by suggesting two ways that neuroethicists and neuroscientists might move together towards a virtue ethical ideal: (i) promoting targeted neuroethics education and opportunities for participating in collective moral deliberation, and (ii) prioritizing engagement amongst researchers, ethicists, and study participants.

Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability—including those in diagnostic criteria, providers’ implicit attitudes and master narratives of disability—negatively affect communicative approaches towards intellectually disabled patients. Non-speaking intellectually disabled patients may also be taken to lack decision-making capacity and resultingly, may be given very little role in determining their care. But, given evidence of the heterogeneous communicative practices available to non-speaking patients, efforts should be made to extend patient-centred communication to them. We offer four suggestions for doing so: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times to develop relationships necessary for communication; (3) disentangling capacity from communication in concept and in practice; and (4) recognising the bidirectional connection between supported decision-making and patient-centred communication.

Visual cortical prostheses (VCPs) have the potential to provide artificial vision for visually impaired persons. However, the nature and utility of this form of vision is not yet fully understood. Participants in the early feasibility trial for the Orion VCP were interviewed to gain insight into their experiences using artificial vision, their motivations for participation, as well as their expectations and assessments of risks and benefits. Analyzed using principles of grounded theory and an interpretive description approach, these interviews yielded six themes, including: the irreducibility of benefit to device functionality, mixed expectations for short-term device functionality and long-term technological advancement of visual prostheses, and a broad range of risks, concerns, and fears related to trial participation. We argue that these narratives motivate a nuanced set of ethical considerations related to the complex relationship between functionality and benefit, the intersection of user experience with disability justice, and the import of expectations and indirect risks on consent.