A man with a spinal-cord injury (right) prepares for a virtual cycle race in which competitors steer avatars using brain signals. COMMENT © 2 0 1 7 M a c m i l l a n P u b l i s h e r s L i m i t e d , p a r t o f S p r i n g e r N a t u r e . A l l r i g h t s r e s e r v e d .example. Moreover, researchers can already interpret a person's neural activity from functional magnetic resonance imaging scans at a rudimentary level 1 -that the individual is thinking of a person, say, rather than a car.It might take years or even decades until BCI and other neurotechnologies are part of our daily lives. But technological developments mean that we are on a path to a world in which it will be possible to decode people's mental processes and directly manipulate the brain mechanisms underlying their intentions, emotions and decisions; where individuals could communicate with others simply by thinking; and where powerful computational systems linked directly to people's brains aid their interactions with the world such that their mental and physical abilities are greatly enhanced.Such advances could revolutionize the treatment of many conditions, from brain injury and paralysis to epilepsy and schizophrenia, and transform human experience for the better. But the technology could also exacerbate social inequalities and offer corporations, hackers, governments or anyone else new ways to exploit and manipulate people. And it could profoundly alter some core human characteristics: private mental life, individual agency and an understanding of individuals as entities bound by their bodies.It is crucial to consider the possible ramifications now.The Morningside Group comprises neuroscientists, neurotechnologists, clinicians, ethicists and machine-intelligence engineers. It includes representatives from Google and Kernel (a neurotechnology start-up in Los Angeles, California); from international brain projects; and from academic and research institutions in the United States, Canada, Europe, Israel, China, Japan and Australia. We gathered at a workshop sponsored by the US National Science Foundation at Columbia University, New York, in May 2017 to discuss the ethics of neurotechnologies and machine intelligence.We believe that existing ethics guidelines are insufficient for this realm 2 . These include the Declaration of Helsinki, a statement of ethical principles first established in 1964 for medical research involving human subjects (go.nature.com/2z262ag); the Belmont Report, a 1979 statement crafted by the US National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research (go.nature.com/2hrezmb); and the Asilomar artificial intelligence (AI) statement of cautionary principles, published early this year and signed by business leaders and AI researchers, among others (go.nature.com/2ihnqac).To begin to address this deficit, here we lay out recommendations relating to four areas of concern: privacy and consent; agency and identity; augmentation; and bias. Different nations and people of varying re...
participated in the conceptualization of this project, drafted portions of the manuscript, and contributed feedback to subsequent drafts; Dr Bluebond-Langner participated in the conceptualization of this project and contributed feedback to subsequent drafts; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
This article reflects on the relevance and applicability of the Belmont Report nearly four decades after its original publication. In an exploration of criticisms that have been raised in response to the report and of significant changes that have occurred within the context of biomedical research, five primary themes arise. These themes include the increasingly vague boundary between research and practice, unique harms to communities that are not addressed by the principle of respect for persons, and how growing complexity and commodification in research have shed light on the importance of transparency. The repercussions of Belmont's emphasis on the protection of vulnerable populations is also explored, as is the relationship between the report's ethical principles and their applications. It is concluded that while the Belmont Report was an impressive response to the ethical issues of its day, the field of research ethics involving human subjects may have outgrown it.
This paper argues against incorporating assessments of individual responsibility into healthcare policies by expanding an existing argument and offering a rebuttal to an argument in favour of such policies. First, it is argued that what primarily underlies discussions surrounding personal responsibility and healthcare is not causal responsibility, moral responsibility or culpability, as one might expect, but biases towards particular highly stigmatised behaviours. A challenge is posed for proponents of taking personal responsibility into account within health policy to either expand the debate to also include socially accepted behaviours or to provide an alternative explanation of the narrowly focused discussion. Second, a critical response is offered to arguments that claim that policies based on personal responsibility would lead to several positive outcomes including healthy behaviour change, better health outcomes and decreases in healthcare spending. It is argued that using individual responsibility as a basis for resource allocation in healthcare is unlikely to motivate positive behaviour changes, and is likely to increase inequality which may lead to worse health outcomes overall. Finally, the case of West Virginia's Medicaid reform is examined, which raises a worry that policies focused on personal responsibility have the potential to lead to increases in medical spending overall.
When it comes to using patient data from the National Health Service (NHS) for research, we are often told that it is a matter of trust: we need to trust, we need to build trust, we need to restore trust. Various policy papers and reports articulate and develop these ideas and make very important contributions to public dialogue on the trustworthiness of our research institutions. But these documents and policies are apparently constructed with little sustained reflection on the nature of trust and trustworthiness, and therefore are missing important features that matter for how we manage concerns related to trust. We suggest that what we mean by ‘trust’ and ‘trustworthiness’ matters and should affect the policies and guidance that govern data sharing in the NHS. We offer a number of initial, general reflections on the way in which some of these features might affect our approach to principles, policies and strategies that are related to sharing patient data for research. This paper is the outcome of a ‘public ethics’ coproduction activity which involved members of the public and two academic ethicists. Our task was to consider collectively the accounts of trust developed by philosophers as they applied in the context of the NHS and to coproduce an argumentative position relevant to this context.
Advancements in novel neurotechnologies, such as brain computer interfaces (BCI) and neuromodulatory devices such as deep brain stimulators (DBS), 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 (1) democratic and inclusive summits to establish globally-coordinated ethical and societal guidelines for neurotechnology development and application, (2) new measures, including “Neurorights,” for data privacy, security, and consent to empower neurotechnology users’ control over their data, (3) new methods of identifying and preventing bias, and (4) the adoption of public guidelines for safe and equitable distribution of neurotechnological devices.
Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what ‘good’ or ‘successful’ public involvement looks like. In an effort to provide guidance to investigators and research organisations, representatives of several key research funding bodies in the UK recently came together to develop the National Standards for Public Involvement in Research. The Standards have critical implications for the future of biomedical research in the UK and in other countries as researchers and funders abroad look to the Standards as a model for their own policy development. We assess the Standards and find that despite offering useful suggestions for dealing with practical challenges associated with public involvement, the Standards fail to address fundamental questions about when, why and with whom public involvement should be undertaken in the first place. We show that presented without this justificatory context, many of the recommendations in the Standards are, at best, fragments that require substantial elaboration by those looking to apply the Standards in their own work and, at worst, subject to potentially harmful misapplication by well-meaning investigators. As funding bodies increasingly push for public involvement in research, the key lesson of our analysis is that future recommendations about how public involvement should be conducted cannot be coherently formulated without a clear sense of the underlying goals and rationales for public involvement.
While it is well known that the homogeneity of clinical trial participants often threatens the goal of attaining generalizable knowledge, researchers often cite issues with recruitment, including a lack of interest from participants, shortages of resources, or difficulty accessing particular populations, to explain the lack of diversity within sampling. It is proposed that social media might provide an opportunity to overcome these obstacles through affordable, targeted recruitment advertisements or messages. Recruiters are warned, however, to be cautious using these means, since risks related to privacy and transparency can take on a new hue.
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