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)

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 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)

In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled (...) people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience. (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)

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)

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)

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)

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?

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)

: 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.

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)

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)

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...

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.

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)

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)

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

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)

This fascinating anthology focuses on the question of how we make families, and how bionormative assumptions shape or distort our collective thinking about parenting, children’s welfare, and state obligations to parents and children. The editors are primarily interested in the question of whether parents’ moral responsibilities toward children differ for children produced through assistive reproductive technologies compared to children brought into the family via adoption. As the editors point out, in the realm of ART, most of the philosophical literature has (...) been focused on parental autonomy and rights to assistance in reproducing, while the adoption literature is almost entirely focused on the... (shrink)

Haeusermann et al. (2023) provide a valuable ethnographic window into how RNS device users understand themselves in relation to refractory epilepsy, the medications for it, and the use of the impla...

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)

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)

Goering argues that children, at any age, have the potential to utilize logic and generate philosophical thinking through role-playing yet challenging games. This activity fosters a philosophical imagination for children.

This article highlights Gareth Matthews's contributions to the field of philosophy for young children, noting especially the inventiveness of his style of engagement with children and his confidence in children's ability to analyze perplexing issues, from cosmology to death and dying. I relate here my experiences in introducing philosophical topics to adolescents, to show how Matthews's work can be successfully extended to older students, and I recommend taking philosophy outside the university as a way to foster critical thinking in young (...) students and to improve the public status of the profession. (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...

Goering writes on the perspectives of her students through contrasting philosophy to unrelated anthological texts which include language arts and history.