Conflicting Interests and New Frontiers: A Role for Virtue Ethics in Cutting Edge Brain Research with Humans.

Abstract

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.