Neural engineering technologies such as implanted deep brain stimulators and brain-computer interfaces represent exciting and potentially transformative tools for improving human health and well-being. Yet their current use and future prospects raise a variety of ethical and philosophical concerns. Devices that alter brain function invite us to think deeply about a range of ethical concerns—identity, normality, authority, responsibility, privacy, and justice. If a device is stimulating my brain while I decide upon an action, am I still the author of the (...) action? Does a device make the interiority of my experience accessible to others? Will the device change the way I think of myself and others think of me? Such fundamental questions arise even when a device is designed for only a relatively circumscribed purpose, such as restoring functioning via a smart prosthetic. We are part of a National Science Foundation-funded Engineering Research Center tasked with investigating philosophical and social implications of neural engineering research and technologies. Neural devices already in clinical use, such as deep brain stimulators for Parkinson's disease or essential tremor, have spurred healthy debate about such implications. Devices currently under development—such as the BrainGate System of implanted brain sensors coupled to robotics in persons with paralysis, exoskeletons for augmented movement, transcranial do-it-yourself stimulators, closed-loop brain stimulating systems, or even brain-to-brain interfacing—promise to extend and deepen these debates. At our center, brain-computer interfaces are the principal focus of work. Even acknowledging that the clinical translation of neural devices and seamless integration by end users may still largely reside in the future, the potential these devices hold calls for careful early analysis. The launching of the Brain Research through Advancing Innovative Neurotechnologies Initiative in April 2013 provides further impetus for this work. (shrink)

Implantable brain–computer interface technology is an expanding area of engineering research now moving into clinical application. Ensuring meaningful informed consent in implantable BCI research is an ethical imperative. The emerging and rapidly evolving nature of implantable BCI research makes identification of risks, a critical component of informed consent, a challenge. In this paper, 6 core risk domains relevant to implantable BCI research are identified—short and long term safety, cognitive and communicative impairment, inappropriate expectations, involuntariness, affective impairment, and privacy and security. (...) Work in deep brain stimulation provides a useful starting point for understanding this core set of risks in implantable BCI. Three further risk domains—risks pertaining to identity, agency, and stigma—are identified. These risks are not typically part of formalized consent processes. It is important as informed consent practices are further developed for implantable BCI research that attention be paid not just to disclosing core research risks but exploring the meaning of BCI research with potential participants. (shrink)

Advancements in novel neurotechnologies, such as brain computer interfaces and neuromodulatory devices such as deep brain stimulators, will have profound implications for society and human rights. While these technologies are improving the diagnosis and treatment of mental and neurological diseases, they can also alter individual agency and estrange those using neurotechnologies from their sense of self, challenging basic notions of what it means to be human. As an international coalition of interdisciplinary scholars and practitioners, we examine these challenges and make (...) recommendations to mitigate negative consequences that could arise from the unregulated development or application of novel neurotechnologies. We explore potential ethical challenges in four key areas: identity and agency, privacy, bias, and enhancement. To address them, we propose democratic and inclusive summits to establish globally-coordinated ethical and societal guidelines for neurotechnology development and application, new measures, including “Neurorights,” for data privacy, security, and consent to empower neurotechnology users’ control over their data, new methods of identifying and preventing bias, and the adoption of public guidelines for safe and equitable distribution of neurotechnological devices. (shrink)

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)

Clinical neuroethics and neuroskepticism are recent entrants to the vocabulary of neuroethics. Clinical neuroethics has been used to distinguish problems of clinical relevance arising from developments in brain science from problems arising in neuroscience research proper. Neuroskepticism has been proposed as a counterweight to claims about the value and likely implications of developments in neuroscience. These two emergent streams of thought intersect within the practice of neurology. Neurologists face many traditional problems in bioethics, like end of life care in the (...) persistent vegetative state, determination of capacity in progressive dementia, and requests for assisted suicide in cognition-preserving neurodegenerative disease (like amyotrophic lateral sclerosis). Neurologists also look to be at the forefront of downstream clinical applications of neuroscience, like pharmacological enhancement of mental life. At the same time, the practice of neurology, concerned primarily with the structure, function, and treatment of the nervous system, has historically fostered a kind of skeptical attitude toward its own subject matter. Not all problems that appear primarily neurological are primarily neurological. This disciplinary skepticism is generally clinical in orientation and limited in scope. The rise of interest in clinical neuroethics and in neuroskepticsim generally suggests a possible broader application. The clinical skepticism of neurology provides impetus for thinking about the appropriate role for skepticism in clinical areas of neuroethics. After a brief review of neuroskepticism and clinical neuroethics, a taxonomy of clinical neuroskepticism is offered and reasons why a stronger rather than weaker form of clinical neuroskepticism is currently warranted. (shrink)

Neural engineers and clinicians are starting to translate advances in electrodes, neural computation, and signal processing into clinically useful devices to allow control of wheelchairs, spellers, prostheses, and other devices. In the process, large amounts of brain data are being generated from participants, including intracortical, subdural and extracranial sources. Brain data is a vital resource for BCI research but there are concerns about whether the collection and use of this data generates risk to privacy. Further, the nature of BCI research (...) involves understanding and making inferences about device users’ mental states, thoughts, and intentions. This, too, raises privacy concerns by providing otherwise unavailable direct or privileged access to individuals mental lives. And BCI-controlled prostheses may change the way clinical care is provided and the type of physical access caregivers have to patients. This, too, has important privacy implications. I In this chapter we examine several of these privacy concerns in light of prominent views of the nature and value of privacy. We argue that increased scrutiny needs to be paid to privacy concerns arising from Big Data and decoding of mental states, but that BCI research may also provide opportunity for individuals to enhance their privacy. (shrink)

Brain-computer Interface (BCI) research is rapidly expanding, and it engages domains of human experience that many find central to our current understanding of ourselves. Ethical principles or guidelines can provide researchers with tools to engage in ethical reflection and to address practical problems in research. Though researchers have called for clearer ethical principles or guidelines, there is little existing data on what form these should take. We developed a prospective set of ethical principles for BCI research with specific guidelines and (...) shared them, via a survey, to participants at the 6th International BCI Meeting at the Asilomar Conference Center in 2016. Respondents were broadly supportive of principles of Care for Subjects, Modesty, Participation, Inclusivity, Relationality, Justice, and Social Impact. Principles more traditionally aligned with responsible conduct of research showed higher levels of endorsement. Researcher support for specific principle-based ethical guidelines varied with respect to stringency of researcher obligations. (shrink)

Implanted medical devices—for example, cardiac defibrillators, deep brain stimulators, and insulin pumps—offer users the possibility of regaining some control over an increasingly unruly body, the opportunity to become part “cyborg” in service of addressing pressing health needs. We recognize the value and effectiveness of such devices, but call attention to what may be less clear to potential users—that their vulnerabilities may not entirely disappear but instead shift. We explore the kinds of shifting vulnerabilities experienced by people with Parkinson’s disease who (...) receive therapeutic deep brain stimulators to help control their tremors and other symptoms of PD. (shrink)

As members of a neuroethics research group funded by the NIH, we echo the call from Fabi and Goldberg for greater funding parity between the ethics of specialized medical technologies and br...

The American Journal of Bioethics, Volume 12, Issue 2, Page 26-27, February 2012.

Recent advancements in neuroengineering research have prompted neuroethicists to propose a variety of “ethical guidance” frameworks (e.g., principles, guidelines, framing questions, responsible research innovation frameworks, and ethical priorities) to inform this work. In this chapter, we offer a comparative analysis of five recently proposed ethical guidance frameworks (NIH neuroethics guiding principles, Nuffield Council on Bioethics, Global Neuroethics Summit Delegates, the Center for Neurotechnology’s neuroethical principles and guidelines, and the Neurotechnology Ethics Taskforce’s ethical priorities). We identify some common themes among these (...) frameworks, making explicit significant areas of convergence. We also highlight three areas of ethical consideration that have not received sufficient attention across these frameworks (extended care for research participants, cultural salience, and stakeholder input). Further attention and analysis of these three areas would improve the breadth and scope of ethical considerations for neuroengineering research. (shrink)

Devices that record from and stimulate the brain are currently available for consumer use. The increasing sophistication and resolution of these devices provide consumers with the opportunity to engage in do-it-yourself brain research and contribute to neuroscience knowledge. The rise of do-it-yourself neuroscience may provide an enriched fund of neural data for researchers, but also raises difficult questions about data quality, standards, and the boundaries of scientific practice. We administered an online survey to brain–computer interface researchers to gather their perspectives (...) on DIY brain research. While BCI researcher concerns about data quality and reproducibility were high, the possibility of expert validation of data generated by citizen neuroscientists mitigated concerns. We discuss survey results in the context of an established ethical framework for citizen science, and describe the potential of constructive collaboration between citizens and researchers to both increase data collection and advance understanding of how the brain operates outside the confines of the lab. (shrink)

Patients with amyotrophic lateral sclerosis face many difficult, timing-sensitive decisions over the course of their illness, weighing present versus future harms and benefits. Supplemented by interviews with people with ALS, we argue for a relational approach to understanding these decisions and their effects on identity. We highlight two critical aspects of the patient–caregiver relationship: the extent to which each may rely on the other leaves their wellbeing intimately intertwined and patients often require others to help with the imaginative task of (...) considering possible futures for each therapeutic option. We show why family involvement in decisionmaking practices can be so critical, and shed light on the ways intimate others help preserve and protect people’s identities amidst the destabilizing uncertainty illness and treatment can bring. (shrink)