In this article, we explore how deep brain stimulation (DBS) devices designed to “close the loop”—to automatically adjust stimulation levels based on computational algorithms—may risk taking the individual agent “out of the loop” of control in areas where (at least apparent) conscious control is a hallmark of our agency. This is of particular concern in the area of psychiatric disorders, where closed-loop DBS is attracting increasing attention as a therapy. Using a relational model of identity and agency, we consider whether (...) DBS designed for psychiatric regulation may require special attention to agency. To do this, we draw on philosophical work on relational identity and agency, connecting it with reports from people using first-generation DBS devices for depression and obsessive-compulsive disorder. We suggest a way to extend a notion of relational agency to encompass neural devices. (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)

Neural devices have the capacity to enable users to regain abilities lost due to disease or injury – for instance, a deep brain stimulator (DBS) that allows a person with Parkinson’s disease to regain the ability to fluently perform movements or a Brain Computer Interface (BCI) that enables a person with spinal cord injury to control a robotic arm. While users recognize and appreciate the technologies’ capacity to maintain or restore their capabilities, the neuroethics literature is replete with examples of (...) concerns expressed about agentive capacities: A perceived lack of control over the movement of a robotic arm might result in an altered sense of feeling responsible for that movement. Clinicians or researchers being able to record and access detailed information of a person’s brain might raise privacy concerns. A disconnect between previous, current, and future understandings of the self might result in a sense of alienation. The ability to receive and interpret sensory feedback might change whether someone trusts the implanted device or themselves. Inquiries into the nature of these concerns and how to mitigate them has produced scholarship that often emphasizes one issue – responsibility, privacy, authenticity, or trust – selectively. However, we believe that examining these ethical dimensions separately fails to capture a key aspect of the experience of living with a neural device. In exploring their interrelations, we argue that their mutual significance for neuroethical research can be adequately captured if they are described under a unified heading of agency. On these grounds, we propose an “Agency Map” which brings together the diverse neuroethical dimensions and their interrelations into a comprehensive framework. With this, we offer a theoretically-grounded approach to understanding how these various dimensions are interwoven in an individual’s experience of agency. (shrink)

The rise of neurotechnologies, especially in combination with artificial intelligence (AI)-based methods for brain data analytics, has given rise to concerns around the protection of mental privacy, mental integrity and cognitive liberty – often framed as “neurorights” in ethical, legal, and policy discussions. Several states are now looking at including neurorights into their constitutional legal frameworks, and international institutions and organizations, such as UNESCO and the Council of Europe, are taking an active interest in developing international policy and governance guidelines (...) on this issue. However, in many discussions of neurorights the philosophical assumptions, ethical frames of reference and legal interpretation are either not made explicit or conflict with each other. The aim of this multidisciplinary work is to provide conceptual, ethical, and legal foundations that allow for facilitating a common minimalist conceptual understanding of mental privacy, mental integrity, and cognitive liberty to facilitate scholarly, legal, and policy discussions. (shrink)

BackgroundAn increasing number of studies utilize intracranial electrophysiology in human subjects to advance basic neuroscience knowledge. However, the use of neurosurgical patients as human research subjects raises important ethical considerations, particularly regarding informed consent and undue influence, as well as subjects’ motivations for participation. Yet a thorough empirical examination of these issues in a participant population has been lacking. The present study therefore aimed to empirically investigate ethical concerns regarding informed consent and voluntariness in Parkinson’s disease patients undergoing deep brain (...) stimulator (DBS) placement who participated in an intraoperative neuroscience study.MethodsTwo semi-structured 30-minute interviews were conducted preoperatively and postoperatively via telephone. Interviews assessed participants’ motivations for participation in the parent intraoperative study, recall of information presented during the informed consent process, and participants’ postoperative reflections on the research study.ResultsTwenty-two participants (mean age = 60.9) completed preoperative interviews at a mean of 7.8 days following informed consent and a mean of 5.2 days prior to DBS surgery. Twenty participants completed postoperative interviews at a mean of 5 weeks following surgery. All participants cited altruism or advancing medical science as “very important” or “important” in their decision to participate in the study. Only 22.7% (n = 5) correctly recalled one of the two risks of the study. Correct recall of other aspects of the informed consent was poor (36.4% for study purpose; 50.0% for study protocol; 36.4% for study benefits). All correctly understood that the study would not confer a direct therapeutic benefit to them.ConclusionEven though research coordinators were properly trained and the informed consent was administered according to protocol, participants demonstrated poor retention of study information. While intraoperative studies that aim to advance neuroscience knowledge represent a unique opportunity to gain fundamental scientific knowledge, improved standards for the informed consent process can help facilitate their ethical implementation. (shrink)

Family members can provide crucial support to individuals participating in clinical trials. In research on the “newest frontier” of Deep Brain Stimulation (DBS)—the use of DBS for psychiatric conditions—family member support is frequently listed as a criterion for trial enrollment. Despite the significance of family members, qualitative ethics research on DBS for psychiatric conditions has focused almost exclusively on the perspectives and experiences of DBS recipients. This qualitative study is one of the first to include both DBS recipients and their (...) family members as interview participants. Using dyadic thematic analysis—an approach that takes both the individuals and the relationship as units of analyses—this study analyzes the complex ways in which family relationships can affect DBS trial participation, and how DBS trial participation in turn influences family relationships. Based on these findings, we propose ways to improve study designs to better take family relationships into account, and better support family members in taking on the complex, essential roles that they play in DBS trials for psychiatric conditions. (shrink)

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)

Do we need a right to mental privacy? In an era of increasing sophistication in recording, interpreting, and directly intervening on our neural activity – not to mention efforts at combining neural...

One important concern regarding implantable Brain Computer Interfaces is the fear that the intervention will negatively change a patient’s sense of identity or agency. In particular, there is concern that the user will be psychologically worse-off following treatment despite postoperative functional improvements. Clinical observations from similar implantable brain technologies, such as deep brain stimulation, show a small but significant proportion of patients report feelings of strangeness or difficulty adjusting to a new concept of themselves characterized by a maladaptive je ne (...) sais quoi despite clear motor improvement. Despite the growing number of cases in the DBS literature, there is currently no accepted or standardized tool in neuroethics specifically designed to capture the phenomenological postoperative experience of patients implanted with DBS or BCI devices. Given potential risks of postoperative maladaptation, it is important for the field of neuroethics to develop a qualitative instrument that can serve as a shared method for capturing postoperative variations in patient experience of identity and agency. The goal of this article is to introduce an instrument we have developed for this purpose and call for further neuroethical efforts to assess the phenomenology of implantable brain device use. (shrink)

New parents suddenly come face to face with myriad issues that demand careful attention but appear in a context unlikely to provide opportunities for extended or clear-headed critical reflection, whether at home with a new baby or in the neonatal intensive care unit. As such, their capacity for autonomy may be compromised. Attending to new parental autonomy as an extension of reproductive autonomy, and as a complicated phenomenon in its own right rather than simply as a matter to be balanced (...) against other autonomy rights, can help us to see how new parents might be aided in their quest for competency and good decision making. In this paper I show how a relational view of autonomy – attentive to the coercive effects of oppressive social norms and to the importance of developing autonomy competency, especially as related to self-trust – can improve our understanding of the situation of new parents and signal ways to cultivate and to better respect their autonomy. (shrink)

Implantable neurotechnology devices such as Brain Computer Interfaces and Deep Brain Stimulators are an increasing part of treating or exploring potential treatments for neurological and psychiatric disorders. While only a few devices are approved, many promising prospects for future devices are under investigation. The decision to participate in a clinical trial can be challenging, given a variety of risks to be taken into consideration. During the consent process, prospective participants might lack the language to consider those risks, feel unprepared, or (...) simply not know what questions to ask. One tool to help empower participants to play a more active role during the consent process is a Question Prompt List. QPLs are communication tools that can prompt participants and patients to articulate potential concerns. They offer a structured list of disease, treatment, or research intervention-specific questions that research participants can use as support for question asking. While QPLs have been studied as tools for improving the consent process during cancer treatment, in this paper, we suggest they would be helpful in neurotechnology research, and offer an example of a QPL as a template for an informed consent tool in neurotechnology device trials. (shrink)

We argue that in implanted neurotechnology research, participants and researchers experience what Henry Richardson has called “moral entanglement.” Participants partially entrust researchers with access to their brains and thus to information that would otherwise be private, leading to created intimacies and special obligations of beneficence for researchers and research funding agencies. One of these obligations, we argue, is about continued access to beneficial technology once a trial ends. We make the case for moral entanglement in this context through exploration of (...) participants’ vulnerability, uncompensated risks and burdens, depth of relationship with the research team, and dependence on researchers in implanted neurotechnology trials. (shrink)

Agency is talked about by many as something that people living with dementia lose, once they've lost much else—autonomy, identity, and privacy, among other things. While the language of loss may capture some of what transpires in dementia, it can obscure how people living with dementia and their loved ones share agency through sharing capacities for memory, language, and decision‐making. We suggest that one consequence of adopting a framework of loss is that it makes the default response to changes in (...) agency the substitution of a family member's agency for the purported lost agency of someone living with dementia. We argue for an alternative framework in which sharing agency is recognized as a central feature of living with dementia. Building on the work of relational theorists, we argue for the value of thinking about agency in dementia as fundamentally shared, and explore potential implications for treatment, caregiver support, and building dementia‐friendly environments. (shrink)

Novel neurotechnologies, like deep brain stimulation and brain‐computer interface, offer great hope for treating, curing, and preventing disease, but raise important questions about effects these devices may have on human identity, authenticity, and autonomy. After briefly assessing recent narrative work in these areas, we show that agency is a phenomenon key to all three goods and highlight the ways in which neural devices can help to draw attention to the relational nature of our agency. Drawing on insights from disability theory, (...) we argue that neural devices provide a kind of agential assistance, similar to that provided by caregivers, family, and others. As such, users and devices participate in a kind of co‐agency. We conclude by suggesting the need for developing relational agency‐competencies—skills for reflecting on the influence of devices on agency, for adapting to novel circumstances ushered in by devices, and for incorporating the feedback of loved ones and others about device effects on agency. (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)

: Genetics researchers often work with distinct communities. To take moral account of how their research affects these communities, they need a richer conception of justice and they need to make those communities equal participants in decision-making about how the research is conducted and what is produced and published out of it.

Separation-based accounts of privacy define privacy as being left alone and unaccessed. Pyrrho et al. propose a more control-based account where privacy is about having the age...

The essays in this volume apply philosophical analysis to address three kinds of questions: What are the implications of genetic science for our understanding of nature? What might it influence in our conception of human nature? What challenges does genetic science pose for specific issues of private conduct or public policy?

Bioethics has already had a rich interaction with the relatively new field of neurotechnology. Scholars have wondered whether neurotechnological interventions, such as deep brain stimulation, are threats to personal identity, lead to alienation or create dilemmas between authenticity and autonomy, impact autonomy, detract from agency, or lead to self-estrangement. Many of these ethical investigations are concerned not with the targeted health benefits of neurotechnology but with whether and how they fit into users' lives in more personal and profound ways.In some (...) ways, this focus on general bioethical issues... (shrink)

As a philosopher interested in biomedical ethics, I find recent advances in genetic technologies both fascinating and frightening. Future technologies for genetic therapies and elimination of clearly deleterious genes offer us the ability to get rid of the cause of much human suffering, seemingly at its physiological root. But memories of past eugenics programs gone horribly awry must make cautious our initial optimism for these generally well-intentioned programs. Most often the scientist proceeds in research with the best of intentions, but (...) that does not make all scientific investigation worth pursuing. (shrink)

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

Genetics researchers often work with distinct communities. To take moral account of how their research affects these communities, they need a richer conception of justice and they need to make those communities equal participants in decision‐making about how the research is conducted and what is produced and published out of it.

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 (PD) (...) who receive therapeutic deep brain stimulators to help control their tremors and other symptoms of PD. (shrink)

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

In the United States, health disparities have been framed by categories of race. Racial health disparities have been documented for cardiovascular disease, cancer, diabetes, HIV/AIDS, and numerous other diseases and measures of health status. Although such disparities can be read as symptoms of disparities in healthcare access, pervasive social and economic inequities, and discrimination, some have suggested that the disparities might be due, at least in part, to biological differences based on race. Or, to be more precise, if race itself (...) has no determined biological meaning, race may nonetheless be a proxy that collects a group of individuals who share certain physiological or genotypic features that affect health. (shrink)

Volume 20, Issue 8, August 2020, Page 78-79.

All of us ponder the big and enduring human questions—Who am I? Am I free? What should I do? What is good? Is there justice?

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)

Disability scholars have argued that the disadvantage of disability is caused primarily by social factors and calls out for social change as a matter of justice. But what about psychiatric disability? While noting several factors that make psychiatric disability a special casethe mentally ill individuals unreliability of judgment and instability of functioningSara Goering argues that much is gained by viewing mental illness through the lens of social oppression and workingtoward recognition of individuals with mental illness as equal members of the (...) human community. (shrink)

ELSI efforts long have been troubled by critiques that they privilege scientific frameworks and grant scientists the power to set ethical agendas. As the first director of the Human Genome Project’...

The formal justice model proposed by Anita Silvers in Disability, Discrimination, and Difference emphasizes the social model of disability and the need for full equality of opportunity, and it suggests that a distributive model of justice that gives special benefits to individuals with disabilities is self-defeating. Yet in that work, Silvers allows an exception for the "profoundly impaired." In this paper, I show how the formal justice theory falls short when it comes to defining and dealing with "profoundly impaired" individuals (...) and explore the ways in which making the exception raises serious theoretical concerns for the grounding of the formal justice model. (shrink)

The potential psychosocial effects of neurotechnology, particularly deep brain stimulation (DBS), have been at the center of a contentious debate within neuroethics. Many scholars have argued that...

Hastings Center Report, Volume 52, Issue 1, Page 61-63, January/February 2022.

This paper presents an overview of the goals, structure, and results of an annual, week-long, summer philosophy institute for high school students. Inspired by other similar programs, the Summer Philosophy Institute of Colorado (SPI-CO) was designed for a culturally diverse group of students, aiming to expose college-track high school students to philosophy, to encourage students in lower-track classifications to pursue college, to offer advising to students on how to make college a reality, to expose both groups of students to critical (...) thinking skills, and to promote cultural diversity in philosophy as a discipline. After explaining why philosophy encourages students in education and why high school students are so well-primed to study it, the authors give a detailed overview of the structure of the institute, including schedule, lesson plan, texts and themes studied, funding, and student demography. The authors conclude by discussing an outreach program that grew out of the SPI-CO and a summary of the initial results of the program. (shrink)