Research that involves implanting devices into the brains of human volunteers creates a special moral obligation that extends beyond the trial period—an obligation that researchers, device manufacturers, and funders owe to the volunteers. This is the conclusion of two new essays in the Hastings Center Report that launch a series on the ethical and social issues raised by brain research.
The "Neuroscience and Society" series is supported by the Dana Foundation and will be published in open-access format online over the next three years.
The series seeks to promote deliberative public engagement about neuroscience, writes Hastings Center senior research scholar Gregory E. Kaebnick, who leads the development of the series, in "Neuroscience and Society: Supporting and Unsettling Public Engagement," the introductory essay. "The ultimate goal of the Neuroscience and Society series is to contribute to a vitally important but somewhat uncertain political project often called 'alignment.' The guiding thought in that project is that science should align with the public's values; it should take society in a direction that's good for society, as judged by society."
Following the introduction, two essays discuss post-trial ethical obligations raised by studies with cutting-edge neural devices that have a range of potential benefits, such as deep brain stimulation to alleviate psychiatric conditions and brain-computer interfaces to aid communication.
Sara Goering, Andrew I. Brown, and Eran Klein
Human participants in neural-device trials are "brain pioneers," entrusting researchers with access to their brains. For many of these researchers, what should happen at the end of the study is a troubling question without a clear answer. "Researchers and funders of neural-device trials owe something to participants that, we insist, exceeds the usual benefits of participating," write the authors. In many cases, "it includes ensuring participants' continued access to neural devices."
Identity Theft, Deep Brain Stimulation, and the Primacy of Post-trial Obligations
Joseph J. Fins, Amanda R. Merner, Megan S. Wright, and Gabriel Lázaro-Muñoz
"When neuroethicists write about deep brain stimulation (DBS) via implanted neural devices, they sometimes resort to science fiction hyperbole—imagining parables of cyborgs whose identities are hijacked by the technology," the essay begins. "This is because with the implantation of such technology comes the threat of a loss of personal identity, that sense of self that is felt as unique to a person." But findings from two deep brain stimulation trials for traumatic brain injury and obsessive-compulsive disorder reveal that injury and illness rob individuals of personal identity and that neuromodulation can restore it. "The early success of these interventions makes a compelling case for continued post-trial access to these technologies."
The series is developed with support from Hastings Center senior research scholar Erik Parens. and the guidance of a steering committee of six scholars:
Jennifer Chandler, University of Ottawa
Winston Chiong, University of California San Francisco
Joseph J. Fins, Weill Cornell Medical School
Sara Goering, University of Washington
Jonathan D. Moreno, University of Pennsylvania
Oliver Rollins, University of Washington
