Asilomar survey: researcher perspectives on ethical principles and guidelines for BCI research

Article · November 2018with 26 Reads
Abstract
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.

Do you want to read the rest of this article?

Request full-text
Request Full-text Paper PDF
This research hasn't been cited in any other publications.
  • Article
    Full-text available
    Emerging technologies such as genomics, nanotechnology, and converging technologies are surrounded by a constellation of fashionable stereotyped phrases such as 'public engagement in science', 'responsible innovation', 'green technology', or 'personalised medicine'. Buzzwords are ubiquitous and used ad libitum by science policy makers, industrial companies in their advertisements, scientists in their research proposals, and journalists. Despite their proliferation in the language of scientific and technological innovation, these buzzwords have attracted little attention among science studies scholars. The purpose of this paper is to try to understand if, and how buzzwords shape the technoscientific landscape. What do they perform? What do they reveal? What do they conceal? Based on a case study of the phrase 'public engagement in science', this paper describes buzzwords as linguistic technologies, capable of three major performances: buzzwords generate matters of concern and play an important role in trying to build consensus; they set attractive goals and agendas; they create unstable collectives through noise.
  • Article
    Full-text available
    Background Brain-Computer Interface (BCI) is a set of technologies that are of increasing interest to researchers. BCI has been proposed as assistive technology for individuals who are non-communicative or paralyzed, such as those with amyotrophic lateral sclerosis or spinal cord injury. The technology has also been suggested for enhancement and entertainment uses, and there are companies currently marketing BCI devices for those purposes (e.g., gaming) as well as health-related purposes (e.g., communication). The unprecedented direct connection created by BCI between human brains and computer hardware raises various ethical, social, and legal challenges that merit further examination and discussion. Methods To identify and characterize the key issues associated with BCI use, we performed a scoping review of biomedical ethics literature, analyzing the ethics concerns cited across multiple disciplines, including philosophy and medicine. ResultsBased on this investigation, we report that BCI research and its potential translation to therapeutic intervention generate significant ethical, legal, and social concerns, notably with regards to personhood, stigma, autonomy, privacy, research ethics, safety, responsibility, and justice. Our review of the literature determined, furthermore, that while these issues have been enumerated extensively, few concrete recommendations have been expressed. Conclusions We conclude that future research should focus on remedying a lack of practical solutions to the ethical challenges of BCI, alongside the collection of empirical data on the perspectives of the public, BCI users, and BCI researchers.
  • Article
    Innovation studies continue to struggle with an apparent disconnect between innovation’s supposedly universal dynamics and a sense that policy frameworks and associated instruments of innovation are often ineffectual or even harmful when transported across regions or countries. Using a cross-country comparative analysis of three implementations of the ‘MIT model’ of innovation in the UK, Portugal and Singapore, we show how key features in the design, implementation and performance of the model cannot be explained as mere variations on an identical solution to the same underlying problem. We draw on the concept of sociotechnical imaginaries to show how implementations of the ‘same’ innovation model – and with it the notion of ‘innovation’ itself – are co-produced with locally specific diagnoses of a societal deficiency and equally specific understandings of acceptable remedies. Our analysis thus flips the conventional notion of ‘best-practice transfer’ on its head: Instead of asking ‘how well’ an innovation model has been implemented, we analyze the differences among the three importations to reveal the idiosyncratic ways in which each country imagines the purpose of innovation. We replace the notion of innovation as a ‘panacea’ – a universal fix for all social woes – with that of innovation-as-diagnosis in which a particular ‘cure’ is ‘prescribed’ for a ‘diagnosed’ societal ‘pathology,’ which may in turn trigger ‘reactions’ within the receiving body. This approach offers new possibilities for theorizing how and where culture matters in innovation policy. It suggests that the ‘successes’ and ‘failures’ of innovation models are not a matter of how well societies are able to implement a sound, universal model, but more about how effectively they articulate their imaginaries of innovation and tailor their strategies accordingly.
  • Article
    Because novel neurotechnologies may alter human identity and society in profound ways, we advocate for the early integration of ethics into neurotechnology. We recommend developing and adopting a set of guidelines, like the Belmont Report on human subject research, as a framework for development and use of brain-related technologies.
  • Article
    Deep brain stimulators (DBS) are a neurotechnological means of treating a variety of movement disorders, including essential tremor (ET). Current stimulation systems apply an electrical current to targets in the brain at a constant rate for as long as they are implanted and activated – treating symptoms but causing uncomfortable side-effects and inefficient power usage. Some users feel estranged or isolated for various reasons. Next-generation DBS systems could use the patient’s self-modulated neural signals to trigger stimulation. These brain-computer interface-triggered DBS (BCI-DBS) systems would give the user the ability to moderate side-effects and reduce battery power consumption. It’s not yet clear, however, whether neural control will alleviate or exacerbate psychosocial problems. To explore these concerns, we conducted interviews with an ET patient using an experimental BCI-DBS platform. Our interviews offer preliminary insights about what problems ET patients may face while using BCI-DBS.
  • Article
    Patients who have undergone deep brain stimulation (DBS) for emerging indications have unique perspectives on ethical challenges that may shape trial design and identify key design features for BCI-driven DBS systems. DBS research in cognitive and emotional disorders has generated significant ethical interest. Much of this work has focused on developing ethical guidelines and recommendations for open-loop DBS systems. While early trials of open-loop DBS for depression gave disappointing results, research is moving toward clinical trials with closed-loop or patient-controllable DBS systems that may modulate aspects of personality and emotion. Though user-centered design is an increasingly important principle in neurotechnology, the perspectives of implanted individuals on ethical issues raised by DBS are poorly understood. We solicited those perspectives through a focus group and set of qualitative interviews of participants in trials of DBS for depression and obsessive-compulsive disorder. We identified four major themes: control over device function, authentic self, relationship effects, and meaningful consent. Each has implications for the design of closed-loop systems for non-motor disorders.
  • Chapter
    Google books https://books.google.ca/books?id=CalHDAAAQBAJ&pg=PA57&dq=Cognitive+enhancement+through+an+ability+studies+lens&hl=en&sa=X&ved=0ahUKEwjWkZKf9PjNAhVN4mMKHfIWAWAQ6AEIKzAA#v=onepage&q=Cognitive%20enhancement%20through%20an%20ability%20studies%20lens&f=false
  • Article
    The idea of interfacing minds with machines has long captured the human imagination. Recent advances in neuroscience and engineering are making this a reality, opening the door to restoration and augmentation of human physical and mental capabilities. Medical applications such as cochlear implants for the deaf and neurally controlled prosthetic limbs for the paralyzed are becoming almost commonplace. Brain-computer interfaces (BCIs) are also increasingly being used in security, lie detection, alertness monitoring, telepresence, gaming, education, art, and human augmentation. This introduction to the field is designed as a textbook for upper-level undergraduate and first-year graduate courses in neural engineering or brain-computer interfacing for students from a wide range of disciplines. It can also be used for self-study, and as a reference by neuroscientists, computer scientists, engineers, and medical practitioners. Key features include: Essential background in neuroscience, brain recording and stimulation technologies, signal processing, and machine learning Detailed description of the major types of BCIs in animals and humans, including invasive, semi-invasive, non-invasive, stimulating, and bidirectional BCIs In-depth discussion of BCI applications and BCI ethics Questions and exercises in each chapter Supporting website with annotated list of book-related links.
  • Article
    Interacting innocently with others, we can become morally entangled with their affairs, despite neither party having intended this. This route to obligation-underexplored by moral philosophers-is of great practical importance to those engaged in medical research on human subjects. Medical researchers encounter all sorts of medical needs in their human subjects. Malaria researchers working in rural Africa may encounter malaria, schistosomiasis, HIV, and other diseases. Brain-scan studies in high-tech research hospitals may reveal suspicious anomalies in the brains of normal volunteers. These subjects may need ancillary care from the researchers: medical care not required to carry out the study safely and soundly. Currently, no authoritative ethical guidance covers such situations. This book's author's partial-entrustment model has been the leading principled account of medical researchers' ancillary-care obligations. Here, this book buttresses and extends this model, newly explaining how these obligations arise as moral entanglements to which researchers open themselves by accepting special permissions to examine study participants' bodies, collect their bodily fluids and tissues, and probe their medical histories. In addition to providing a full-dress philosophical defense for the partial-entrustment model, this book addresses the most important concrete and practical issues that arise regarding ancillary care, including justice, exploitation, waivability, and prioritization. The book closes by noting issues needing further exploration, broader philosophical implications, and practical steps we can take now.
  • Article
    Full-text available
    This chapter discusses initiatives in the field of "Responsible Innovation" (RI) at different levels and some of their dynamics. Then it focuses on two types of intervention-oriented activities that concretely support and stimulate aspirations for RI/Responsible Research and Innovation" (RRI): socio-technical integration research (STIR) and constructive technology assessment (CTA). Finally, it discusses tensions in the concept and practices of RI/RRI, particularly in the light of its prospects for effectiveness and institutionalization.
  • Article
    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.
  • Article
    Full-text available
    Alzheimer’s disease is a major worldwide health problem with no effective therapy. Deep brain stimulation (DBS) has emerged as a useful therapy for certain movement disorders and is increasingly being investigated for treatment of other neural circuit disorders. Here we review the rationale for investigating DBS as a therapy for Alzheimer’s disease. Phase I clinical trials of DBS targeting memory circuits in Alzheimer’s disease patients have shown promising results in clinical assessments of cognitive function, neurophysiological tests of cortical glucose metabolism, and neuroanatomical volumetric measurements showing reduced rates of atrophy. These findings have been supported by animal studies, where electrical stimulation of multiple nodes within the memory circuit have shown neuroplasticity through stimulation-enhanced hippocampal neurogenesis and improved performance in memory tasks. The precise mechanisms by which DBS may enhance memory and cognitive functions in Alzheimer’s disease patients and the degree of its clinical efficacy continue to be examined in ongoing clinical trials.
  • Article
    Notes on contributors Acknowledgements 1. The Idiom of Co-production Sheila Jasanoff 2. Ordering Knowledge, Ordering Society Sheila Jasanoff 3. Climate Science and the Making of a Global Political Order Clark A. Miller 4. Co-producing CITES and the African Elephant Charis Thompson 5. Knowledge and Political Order in the European Environment Agency Claire Waterton and Brian Wynne 6. Plants, Power and Development: Founding the Imperial Department of Agriculture for the West Indies, 1880-1914 William K. Storey 7. Mapping Systems and Moral Order: Constituting property in genome laboratories Stephen Hilgartner 8. Patients and Scientists in French Muscular Dystrophy Research Vololona Rabeharisoa and Michel Callon 9. Circumscribing Expertise: Membership categories in courtroom testimony Michael Lynch 10. The Science of Merit and the Merit of Science: Mental order and social order in early twentieth-century France and America John Carson 11. Mysteries of State, Mysteries of Nature: Authority, knowledge and expertise in the seventeenth century Peter Dear 12. Reconstructing Sociotechnical Order: Vannevar Bush and US science policy Michael Aaron Dennis 13. Science and the Political Imagination in Contemporary Democracies Yaron Ezrah 14. Afterword Sheila Jasanoff References Index
  • Article
    Full-text available
    Climate change is causing organisms to migrate into new geographic areas, with most organisms tracking the movement of suitable temperatures poleward ( 1 ). The movements appear to be more rapid for marine than for terrestrial fauna ( 2 ), perhaps because marine organisms have fewer barriers to dispersal ( 3 ), but many marine organisms do encounter barriers that inhibit their ability to colonize new habitats. On page 1135 of this issue, Muir et al. ( 4 ) show that low wintertime irradiance limits the poleward expansion of staghorn corals. On page 1132, Deutsch et al. ( 5 ) identify another barrier to marine species: the ratio of oxygen supply and metabolic demand, which determines in which parts of the ocean fish and invertebrates have enough oxygen to support their metabolic needs. These two studies remind us that climate change will reshape marine species habitats but not necessarily expand them.
  • Article
    Full-text available
    Responsible innovation requires that scientific and other expert practices be responsive to society. We take stock of various collaborative approaches to socio-technical integration that seek to broaden the societal contexts technical experts take into account during their routine activities. Part of a larger family of engaged scholarship that includes inter- and transdisciplinarity as well as stakeholder and public engagement, we distinguish collaborative socio-technical integration in terms of its proximity to and transformation of expert practices. We survey a variety of approaches that differ widely in terms of their integrative methods, conceptions of societal context, roles, and aspirations for intervention. Taking a handful of “communities of integration” as exemplars, we then provide a framework for comparing the forms, means, and ends of collaborative integration. We conclude by reflecting on some of the main features of, and tensions within, this developing arena of practical inquiry and engagement and what this suggests for integrative efforts aimed at responsible innovation.
  • Article
    More than 300 researchers gathered at the 2013 International Brain-Computer Interface (BCI) Meeting to discuss current practice and future goals for BCI research and development. The authors organized the Virtual Users' Forum at the meeting to provide the BCI community with feedback from users. We report on the Virtual Users' Forum, including initial results from ongoing research being conducted by 2 BCI groups. Online surveys and in-person interviews were used to solicit feedback from people with disabilities who are expert and novice BCI users. For the Virtual Users' Forum, their responses were organized into 4 major themes: current (non-BCI) communication methods, experiences with BCI research, challenges of current BCIs, and future BCI developments. Two authors with severe disabilities gave presentations during the Virtual Users' Forum, and their comments are integrated with the other results. While participants' hopes for BCIs of the future remain high, their comments about available systems mirror those made by consumers about conventional assistive technology. They reflect concerns about reliability (eg, typing accuracy/speed), utility (eg, applications and the desire for real-time interactions), ease of use (eg, portability and system setup), and support (eg, technical support and caregiver training). People with disabilities, as target users of BCI systems, can provide valuable feedback and input on the development of BCI as an assistive technology. To this end, participatory action research should be considered as a valuable methodology for future BCI research. Copyright © 2015 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
  • Article
    More than two decades after the passage of the Americans with Disabilities Act (1990), people with disabilities continue to live at the margins of American democracy and capitalist society. This persistent exclusion poses a conundrum to political theorists committed to disability rights, multiculturalism, and social justice. Drawing from feminist insights, specifically the work of Nancy Fraser, among others, I examine the necessary conditions for meaningful inclusion to be realized within a deliberative democracy. Using Fraser's concept of “participatory parity” as a proxy for inclusion, I strategize how to overcome informal barriers—economic inequality and misrecognition—that persist even after disabled people are granted the legal right to participate. The analysis concludes that a truly inclusionary and multicultural democracy requires the redistribution of wealth and a more expansive model of political deliberation, one that can recognize unconventional (even nonverbal) modes of communication through practices of translation.
  • Article
    Full-text available
    There is a pressing clinical need for responsive neurostimulators, which sense a patient’s brain activity and deliver targeted electrical stimulation to suppress unwanted symptoms. This is particularly true in psychiatric illness, where symptoms can fluctuate throughout the day. Affective BCIs, which decode emotional experience from neural activity, are a candidate control signal for responsive stimulators targeting the limbic circuit. Present affective decoders, however, cannot yet distinguish pathologic from healthy emotional extremes. Indiscriminate stimulus delivery would reduce quality of life and may be actively harmful. We argue that the key to overcoming this limitation is to specifically decode volition, in particular the patient’s intention to experience emotional regulation. Those emotion-regulation signals already exist in prefrontal cortex (PFC), and could be extracted with relatively simple BCI algorithms. We describe preliminary data from an animal model of PFC-controlled limbic brain stimulation and discuss next steps for pre-clinical testing and possible translation.
  • Article
    Full-text available
    The idea of creating a direct connection between a human brain and a computer has a long history in science fiction. The development of brain computer interfaces (BCI), technologies permitting direct communication between a user's brain and an external device, began to become a reality in the 1970s (Vidal, 1973), and have since captured the attention of scientists and the public alike. Initially conceptualized for military use—the initial work was funded by the National Science Foundation and the Defense Advanced Research Projects Agency (DARPA)—more recently BCIs have shown promise for therapeutic uses, providing hope for restorative and even enhanced human capacities. Utilizing both invasive and non-invasive technologies, scientists are now capable of recording and translating activity from populations of neurons to operate external devices (e.g., O'Doherty et al., 2011). In early 2013, the technology took a leap forward as researchers replaced the external computer connection with a second embodied brain, dubbing the approach “brain-to-brain” interfacing (BTBI). The direct transfer of information between two brains raises new and important ethical issues. Below, we summarize the first two landmark studies in BTBI research, and then discuss ethical concerns relevant to BTBI as they are applied in clinical, research, and non-therapeutic domains.
  • Article
    Full-text available
    Brain-controlled prosthetic robots that restore independent activities of daily living to paralyzed people are about to enter everyday life environments (1). The regained ability to grasp a cup of coffee, hand over a credit card, or sign a document with a pen (1) enhances the independence and self-determination of severely paralyzed individuals. However, introducing devices controlled via brain-machine interfaces (BMIs) into everyday environments, possibly enhancing the capabilities of able-bodied people to interact with digital devices, raises a number of ethical and social challenges in the areas of (i) autonomy, responsibility, and accountability; (ii) data security and privacy; and (iii) managing end-user expectations about a promising field of medical advances. We here take a closer look at these issues and suggest some possible answers to addressing them.
  • Article
    Full-text available
    The governance of emerging science and innovation is a major challenge for contemporary democracies. In this paper we present a framework for understanding and supporting efforts aimed at ‘responsible innovation’. The framework was developed in part through work with one of the first major research projects in the controversial area of geoengineering, funded by the UK Research Councils. We describe this case study, and how this became a location to articulate and explore four integrated dimensions of responsible innovation: anticipation, reflexivity, inclusion and responsiveness. Although the framework for responsible innovation was designed for use by the UK Research Councils and the scientific communities they support, we argue that it has more general application and relevance.
  • Article
    Full-text available
    This article explores the notion of the dislocated self following deep brain stimulation (DBS) and concludes that when personal identity is understood in dynamic, narrative, and relational terms, the claim that DBS is a threat to personal identity is deeply problematic. While DBS may result in profound changes in behaviour, mood and cognition (characteristics closely linked to personality), it is not helpful to characterize DBS as threatening to personal identity insofar as this claim is either false, misdirected or trivially true. The claim is false insofar as it misunderstands the dynamic nature of identity formation. The claim is misdirected at DBS insofar as the real threat to personal identity is the discriminatory attitudes of others towards persons with motor and other disabilities. The claim is trivially true insofar as any dramatic event or experience integrated into one’s identity-constituting narrative could then potentially be described as threatening. From the perspective of relational personal identity, when DBS dramatically disrupts the narrative flow, this disruption is best examined through the lens of agency. For illustrative purposes, the focus is on DBS for the treatment of Parkinson’s disease.
  • Article
    Disabled people frequently find themselves in situations where their quality of life and wellbeing is being measured or judged by others, whether in decisions about health care provision or assessments for social supports. Recent debates about wellbeing and how it might be assessed (through subjective and/or objective measures) have prompted a renewed focus on disabled people’s wellbeing because of its seemingly ‘anomalous’ nature; that is, whilst to external (objective) observers the wellbeing of disabled people appears poor, based on subjective assessments, people with disabilities report a good quality of life. In this paper, I examine an article by the philosopher Dan Moller in which he seeks to explain this ‘disability paradox’. Despite agreeing with his analysis that there is more to what people value than happiness, his explanation reflects some of the difficulties presented in philosophical accounts which seek to understand the lives of disabled people: this includes an analysis which fails to problematise definitions of wellbeing and who has the ‘voice’ to do the defining; which negates the multiple identities and subject positions that disabled people occupy; and which lacks recognition of the social contexts which mediate disabled people’s lives. I suggest that there is a need to incorporate disabled people’s voices into research which deepens our empirical knowledge about the relationship between impairment and wellbeing, including the social circumstances that shape disabled people’s agency.
  • Article
    Full-text available
    In discussions of performance enhancement, as in applied ethics generally, it is tempting to think that we can answer the hard ethical questions by discovering boundary lines that lie in the subject matter itself. The hope, here, is that we could settle an array of thorny issues if only we could identify the fault-lines between, for example, therapy and enhancement, or between pharmacological identitymanagement and the restoration of the authentic self. And within the wider public debate, there are loud voices declaring that the boundary-lines are actually so obvious that only self-interested lawyers and out-of-touch intellectuals could miss them.
  • Article
    abstractIn this paper I develop a characterization of disability according to which disability is in no way a sub-optimal feature. I argue, however, that this conception of disability is compatible with the idea that having a disability is, at least in a restricted sense, a harm. I then go on to argue that construing disability in this way avoids many of the common objections levelled at accounts which claim that disability is not a negative feature.
  • Article
    We need a feminist theory of disability, both because 16 percent of women are disabled, and because the oppression of disabled people is closely linked to the cultural oppression of the body. Disability is not a biological given; like gender, it is socially constructed from biological reality. Our culture idealizes the body and demands that we control it. Thus, although most people will be disabled at some time in their lives, the disabled are made “the other,” who symbolize failure of control and the threat of pain, limitation, dependency, and death. If disabled people and their knowledge were fully integrated into society, everyone's relation to her/his real body would be liberated.
  • Article
    Full-text available
    Brain-Computer Interface (BCI) research and (future) applications raise important ethical issues that need to be addressed to promote societal acceptance and adequate policies. Here we report on a survey we conducted among 145 BCI researchers at the 4th International BCI conference, which took place in May–June 2010 in Asilomar, California. We assessed respondents’ opinions about a number of topics. First, we investigated preferences for terminology and definitions relating to BCIs. Second, we assessed respondents’ expectations on the marketability of different BCI applications (BCIs for healthy people, BCIs for assistive technology, BCIs-controlled neuroprostheses and BCIs as therapy tools). Third, we investigated opinions about ethical issues related to BCI research for the development of assistive technology: informed consent process with locked-in patients, risk-benefit analyses, team responsibility, consequences of BCI on patients’ and families’ lives, liability and personal identity and interaction with the media. Finally, we asked respondents which issues are urgent in BCI research. KeywordsBrain-computer interfaces–Brain-machine interfaces–Neuroethics–Neuroimaging–Locked-in syndrome
  • Article
    Full-text available
    Brain Computer Interfaces (BCIs) enable one to control peripheral ICT and robotic devices by processing brain activity on-line. The potential usefulness of BCI systems, initially demonstrated in rehabilitation medicine, is now being explored in education, entertainment, intensive workflow monitoring, security, and training. Ethical issues arising in connection with these investigations are triaged taking into account technological imminence and pervasiveness of BCI technologies. By focussing on imminent technological developments, ethical reflection is informatively grounded into realistic protocols of brain-to-computer communication. In particular, it is argued that human-machine adaptation and shared control distinctively shape autonomy and responsibility issues in current BCI interaction environments. Novel personhood issues are identified and analyzed too. These notably concern (i) the “sub-personal” use of human beings in BCI-enabled cooperative problem solving, and (ii) the pro-active protection of personal identity which BCI rehabilitation therapies may afford, in the light of so-called motor theories of thinking, for the benefit of patients affected by severe motor disabilities.
  • Article
    According to a standard view, the physical boundary of the person—the skin-and-skull boundary—matters morally because this boundary delineates between where the person begins and the world ends. On the basis of this view we make a distinction between invasive interventions that penetrate this boundary and non-invasive interventions that do not. The development of neuroprosthetics, however, raises questions about the significance of this boundary and the relationship between person and body. In particular it has been argued by appeal to the Extended Mind thesis that mind and person can extend beyond the body, and hence the skin-and-skull boundary is of questionable significance. In this paper I argue that the Extended Mind thesis is consistent with the ethical relevance of the skin-and-skull barrier. Although it can be argued that cognitive processes and aspect of mind can extend beyond the skin-and-skull boundary as EM claims, it does not follow that the person is also extended beyond this boundary. The moral sense of person is closely related to the notion of person as a subject of experiences and this, in turn, is related to the sensory and somatosensory aspects of the body. The development of neuroprosthetics provides us with reason to see that persons can be variously embodied, but this is consistent with the functional and ethical significance of the skin-and-skull boundary. KeywordsNeurotechnology–“Extended Mind”–Neuroethics–Invasiveness
  • Article
    Full-text available
    The steadily growing field of brain-computer interfacing (BCI) may develop useful technologies, with a potential impact not only on individuals, but also on society as a whole. At the same time, the development of BCI presents significant ethical and legal challenges. In a workshop during the 4th International BCI meeting (Asilomar, California, 2010), six panel members from various BCI laboratories and companies set out to identify and disentangle ethical issues related to BCI use in four case scenarios, which were inspired by current experiences in BCI laboratories. Results of the discussion are reported in this article, touching on topics such as the representation of persons with communication impairments, dealing with technological complexity and moral responsibility in multidisciplinary teams, and managing expectations, ranging from an individual user to the general public. Furthermore, we illustrate that where treatment and research interests conflict, ethical concerns arise. On the basis of the four case scenarios, we discuss salient, practical ethical issues that may confront any member of a typical multidisciplinary BCI team. We encourage the BCI and rehabilitation communities to engage in a dialogue, and to further identify and address pressing ethical issues as they occur in the practice of BCI research and its commercial applications.
  • Article
    Full-text available
    Braincomputer interfaces (BCIs) allow their users to communicate or control external devices using brain signals rather than the brain's normal output pathways of peripheral nerves and muscles. Motivated by the hope of restoring independence to severely disabled individuals and by interest in further extending human control of external systems, researchers from many fields are engaged in this challenging new work. BCI research and development has grown explosively over the past two decades. Efforts have begun recently to provide laboratory-validated BCI systems to severely disabled individuals for real-world applications. In this paper, we discuss the current status and future prospects of BCI technology and its clinical applications. We will define BCI, review the BCI-relevant signals from the human brain, and describe the functional components of BCIs. We will also review current clinical applications of BCI technology and identify potential users and potential applications. Lastly, we will discuss current limitations of BCI technology, impediments to its widespread clinical use, and expectations for the future.
  • Article
    Brain-computer interfaces (BCIs) acquire brain signals, analyze them, and translate them into commands that are relayed to output devices that carry out desired actions. BCIs do not use normal neuromuscular output pathways. The main goal of BCI is to replace or restore useful function to people disabled by neuromuscular disorders such as amyotrophic lateral sclerosis, cerebral palsy, stroke, or spinal cord injury. From initial demonstrations of electroencephalography-based spelling and single-neuron-based device control, researchers have gone on to use electroencephalographic, intracortical, electrocorticographic, and other brain signals for increasingly complex control of cursors, robotic arms, prostheses, wheelchairs, and other devices. Brain-computer interfaces may also prove useful for rehabilitation after stroke and for other disorders. In the future, they might augment the performance of surgeons or other medical professionals. Brain-computer interface technology is the focus of a rapidly growing research and development enterprise that is greatly exciting scientists, engineers, clinicians, and the public in general. Its future achievements will depend on advances in 3 crucial areas. Brain-computer interfaces need signal-acquisition hardware that is convenient, portable, safe, and able to function in all environments. Brain-computer interface systems need to be validated in long-term studies of real-world use by people with severe disabilities, and effective and viable models for their widespread dissemination must be implemented. Finally, the day-to-day and moment-to-moment reliability of BCI performance must be improved so that it approaches the reliability of natural muscle-based function.
  • Article
    Full-text available
    At the height of the psychosurgery debate the editors of The Lancet referenced the popular hesitancy to intervene surgically with the workings of the brain. They wrote that to do so `carries a peculiar penumbra of sacrilege' [1, 2]. Penumbra of sacrilege is a memorable, even strange phrase. It is one worth unpacking as we embark on an era which will see ever more border crossings at the blood-brain barrier. By invoking popular beliefs about a penumbra of sacrilege, the editors were suggesting that psychosurgery represented a gray zone in the shadows, a desecration or violation of a sacred space, the seat of the soul, the self. And as such, they were reflecting a cultural hesitancy, a lay reluctance to pursue this work. Fortunately for those with intractable neuropsychiatric disorders, neuromodulation has evolved beyond the primitive---and barbaric---sweep of the lobotomy, and with this advance, categorical resistance to this work has dissipated. And that is all to the good. But as the field progresses, and we implant more and more devices for therapeutic and investigational purposes, we must not let the placement of electrodes become too easy. It is a decision that should be made with full awareness of its implications for patients and families. Recently, I spoke to a friend who appeared to have early essential tremor. (Some non-essential aspects of this story have been changed to protect confidentiality.) He asked me, `Do you know anything about deep brain stimulation?' I indicated that I did. `Really?', he asked, seemingly unaware of my scholarly interest in the topic [3, 4, 5, 6] and involvement as a co-investigator in the use of deep brain stimulation in the minimally conscious state [7, 8, 9]. Satisfied that I might be a credible source for some free advice, he told me that his neurologist had sent him to a neurosurgeon to see about a stimulator. I asked him how disabling his condition was. As he competently drank a cup of soda, he told me it was a bit of a nuisance but nothing worse. As I recall the conversation, he was not receiving much more than a low-dose beta-blocker by way of medical management. Although I am an internist, and neither a neurologist nor neurosurgeon, it struck me as a bit premature to shuttle my friend off for an implant. It just should not be so easy. I asked myself: where had that penumbra of sacrilege gone? At some level, has this gotten too easy, too routine? Although this is but an anecdote, it is a disturbing one. My friend's referral was outside coverage norms established by the Centers for Medicare & Medicaid Services (CMS). Their 2003 national coverage determination for thalamic ventralis intemedius nucleus (VIM) deep brain stimulation (DBS) in essential tremor requires `marked disabling tremor of at least level 3 or 4 on the Fahn-Tolosa-Marin tremor rating scale (or equivalent scale) in the extremity intended for treatment, causing significant limitation in daily activities despite optimal medical therapy' [10, 11]. As best as I could tell, my friend met neither criteria for symptom severity nor adequate medical treatment. Even more striking was the casualness with which he told me about his neurologist's referral. One would think that he was being sent for the simplest of procedures, without any risks or long-term sequelae, notwithstanding specific complications associated with thalamic DBS for essential tremor [12]. It is a tribute to the nascent field of neuromodulation that, in the twenty years since Professor Alim Benabid's pioneering work heralded these new treatment modalities [13], stimulator placement has been analogized to the insertion of a heart pacemaker. But is the insertion of a cerebral pacemaker as routine as its cardiac counterpart? At this juncture I would venture to say it is not. While the acute surgical risks are slim, the longitudinal challenge for competent on-going care is high. Simply put, the community-based infrastructure to follow and support the growing number of patients with deep brain stimulators does not exist. Most patients go to highly specialized centers that have interdisciplinary teams able to assess, implant and support patients. But after surgery they return to their communities only to find a paucity of qualified neurologists and neurosurgeons able to provide on-going care. Even for rather routine matters like battery replacement or the adjustment of stimulation parameters, they need to return to the centers that performed the surgery. Follow-up there is all the more necessary for hardware failures, which still occur at non-trivial rates [14, 15]. This dependence on the mother ship is not the same for cardiac pacemakers. Any community hospital with a cardiology service can handle most complications and provide routine maintenance. Until a comparable neuromodulation infrastructure is in place, we need to be more prudent in determining who gets a stimulator. The prospects are even worse for those who are enrolled in clinical trials for new indications or have an innovative investigational device. What is their fate? What happens to these patients when the trial ends? Who provides on-going care? Who pays for battery replacement? Who removes a broken device? Who adjusts stimulation parameters ... in perpetuity? Because there is still virtually no group to take on these tasks, it is critically important that the neuromodulation community collectively affirm our on-going ethical obligation to these subjects once they leave trials and become patients. Our professional norms should reflect adherence to the ethical principle of non-abandonment. This duty is grounded in a deontological respect for persons. In the context of a neuromodulation trial, this means that once a subject is enrolled in a trial or under our care, we have a longitudinal fiduciary obligation to provide them with support. After a subject is implanted, the investigative team---and its sponsors---incur a clinical responsibility to provide on-going care and a fiscal responsibility for any associated costs. It is a breach of professional ethics to do otherwise. Such enduring covenants must be articulated in clinical protocols and be determinative in regulatory decisions by local Institutional Review Boards (IRBs) to reject or approve investigative protocols. The articulation of such `after-care' provisions should also be expected in any new IDE application to the Food and Drug Administration. To sustain clinical progress and investigative momentum, the neuromodulation community must embrace its ethical responsibility for comprehensive and on-going follow-up care. We need to populate a clinical infrastructure that can support patients and research subjects in their communities, especially as their conditions deteriorate and travel becomes more difficult. We need to disseminate our sequestered expertise more widely to primary care specialties. This ethical mandate transcends the clinical assessors, operators, and sponsors of clinical trials. It also applies to engineers who are well-positioned to help lessen the burden for patients and subjects. On the engineering side of this equation, innovation is the key. The development of better batteries with longer shelf lives or power management systems that optimize utilization of available capacitance will be a tremendous boon in streamlining follow-up care. So too will be the development of simplified device control systems to manipulate basic functions that would be operable by generalist physicians. Imagine a universal wand that could deactivate a device, and perform some rudimentary functions, that every Emergency Department could stock. Making such a basic parallel low-tech system universal amongst many device manufacturers would provide additional access to care in the community and a degree of safety in an emergency. Engineers might also work towards the development of mechanisms to give patients and subjects greater control over their devices, which are after all extrinsic intrusions on their bodies and their selves. Previously, I suggested that stimulation parameters for the treatment of neuropsychiatric disorders might be manipulated by patients one day. I envisioned a degree of patient discretion, within a pre-set safe range determined by physicians, much like patient-controlled analgesia (PCA) pumps give patients control over the dosing of opioid analgesia [3]. I am glad that such an advance is evolving as a means to preserve batteries in the treatment of motor disorders [16]. I would encourage the neural engineers to embrace the ethical mandate to develop additional platforms that might enhance patient self-determination and foster a greater degree of functional independence. While the neuromodulation community has every reason to celebrate its accomplishments, it would be better served by appreciating that the insertion of a device into the human brain comes with, if not the penumbra of sacrilege, a moral obligation to step out of the shadows and remain clearly available to patients and families over the long haul. Although neuromodulation has liberated many patients from the shackles of disease, we need to appreciate that the hardware that has made this possible can remain tethering. The challenge for the next generation of innovators is to minimize these burdens at this neural interface. By reducing barriers to care that exist in an unprepared health care system and developing more user-friendly technology, the neuromodulation community can expand its reach and broaden the relief provided by these neuro-palliative interventions [17]. Acknowledgements and Disclosures Dr Fins is the recipient of an Investigator Award in Health Policy Research (Minds Apart: Severe Brain Injury and Health Policy) from The Robert Wood Johnson Foundation. He also gratefully acknowledges grant support from the Buster Foundation (Neuroethics and Disorders of Consciousness). He is an unfunded co-investigator of a study of deep brain stimulation in the minimally conscious state, funded by Intelect Medical Inc. References [1] 1972 Editorial: Psychosurgery Lancet 7767 69-70 [2] Fins J J 2002 The ethical limits of neuroscience The Lancet Neurology 1 213 [3] Fins J J 2003 From psychosurgery to neuromodulation and palliation: history's lessons for the ethical conduct and regulation of neuropsychiatric research Neurosurgery Clinics of North America 14 303-19 [4] Fins J J 2004 Deep brain stimulation Encyclopedia of Bioethics, Vol 2 3rd edn, ed S G Post (New York: MacMillan Reference) pp 629-34 [5] Fins J J 2004 Neuromodulation, free will and determinism: lessons from the psychosurgery debate Clinical Neuroscience Research 4 113-18 [6] Fins J J 2009 Deep brain stimulation: ethical issues in clinical practice and neurosurgical research Neuromodulation eds E Krames, P H Peckham and A Rezai (London: Elsevier) pp 81-91 [7] Schiff N D, Giacino J T, Kalmar K, Victor J D, Baker K, Gerber M, Fritz B, Eisenberg B, O'Connor J, Kobylarz E J, Farris S, Machado A, McCagg C, Plum F, Fins J J, Rezai A R 2007 Behavioral improvements with thalamic stimulation after severe traumatic brain injury Nature 448 600-3 [8] Schiff N D and Fins J J 2007 Deep brain stimulation and cognition: moving from animal to patient Current Opinion in Neurology 20 638-42 [9] Schiff N D, Giacino J T and Fins J J 2009 Deep brain stimulation, neuroethics and the minimally conscious state: moving beyond proof of principle Arch. Neurology 66 697-702 [10] CMS 160.24 NCD for deep brain stimulation for essential tremor and Parkinson's disease, 1~April~2003 [11] CMS Manual System 100-04 Medicare claims processing, transmittal 128, 26 March 2004 http://www.cms.hhs.gov/Transmittals/Downloads/R128CP.pdf [12] Schwalb J M, Riina H A, Skolnick B, Jaggi J L, Simuni T and Baltuch G H 2001 Revision of deep brain stimulator for tremor: technical note J. Neurosurg. 94 1010-12 [13] Speelman J D and Bosch D A 1998 Resurgence of functional neurosurgery for Parkinson's disease: a historical perspective Movement Disorders 13 582-8 [14] Kondziolka D, Whiting D, Germanwala A and Oh M 2002 Hardware-related complications after placemen of thalamic deep brain stimulator systems Stereotact. Funct. Neurosurg. 79 228-33 [15] Okun M S, Tagliati M, Pourfar M, Fernandez H H, Rodriguez R L, Alterman R L and Foote K~D 2005 Management of referred deep brain stimulation failures: a retrospective analysis from movement disorders centers Arch. Neurology 62 1250-5 [16] Kronenbuerger M, Fromm C, Block F, Coenen V A, Rohde I, Rohde V and Noth J 2006 On-demand deep brain stimulation for essential tremor: a report on four cases Movement Disorders 21 401-5 [17] Fins J J 2008 Neuroethics and disorders of consciousness: a pragmatic approach to neuro-palliative care The Neurology of Consciousness, Cognitive Neuroscience and Neuropathology eds S Laureys and G Tononi (New York: Academic-Elsevier) pp 234-44
  • Article
    This paper focuses on ethical aspects of BCI, as a research and a clinical tool, that are challenging for practitioners currently working in the field. Specifically, the difficulties involved in acquiring informed consent from locked-in patients are investigated, in combination with an analysis of the shared moral responsibility in BCI teams, and the complications encountered in establishing effective communication with media.
  • Article
    Full-text available
    Brain-implantable devices have a promising future. Key safety issues must be resolved, but the ethics of this new technology present few totally new challenges, says Jens Clausen.
  • Article
    For many years people have speculated that electroencephalographic activity or other electrophysiological measures of brain function might provide a new non-muscular channel for sending messages and commands to the external world – a brain–computer interface (BCI). Over the past 15 years, productive BCI research programs have arisen. Encouraged by new understanding of brain function, by the advent of powerful low-cost computer equipment, and by growing recognition of the needs and potentials of people with disabilities, these programs concentrate on developing new augmentative communication and control technology for those with severe neuromuscular disorders, such as amyotrophic lateral sclerosis, brainstem stroke, and spinal cord injury. The immediate goal is to provide these users, who may be completely paralyzed, or ‘locked in’, with basic communication capabilities so that they can express their wishes to caregivers or even operate word processing programs or neuroprostheses. Present-day BCIs determine the intent of the user from a variety of different electrophysiological signals. These signals include slow cortical potentials, P300 potentials, and mu or beta rhythms recorded from the scalp, and cortical neuronal activity recorded by implanted electrodes. They are translated in real-time into commands that operate a computer display or other device. Successful operation requires that the user encode commands in these signals and that the BCI derive the commands from the signals. Thus, the user and the BCI system need to adapt to each other both initially and continually so as to ensure stable performance. Current BCIs have
  • Article
    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.