Advances in neuroscience and other disciplines are producing large-scale brain data consisting of datasets from multiple organisms, disciplines, and jurisdictions in different formats. However, due to the lack of an international data governance framework brain data is currently being produced under various contextual ethical and legal principles which may influence key stakeholders involved in the generation, collection, processing and sharing of brain data thereby raising ethical and legal challenges. In addition, despite the demand for a brain data governance framework that (...) accounts for culture, there is a gap in empirical research and actions to understand how key stakeholders around the world view these issues using neuroscientists who are affected by these ethical and legal principles. Therefore, using the research question how do ethical and legal principles influence data governance in neuroscience? we attempt to understand the perceptions of key actors on the principles, issues and concerns that can arise from brain data research. We carried out interviews with 21 leading international neuroscientists. The analytical insights revealed key ethical and legal principles, areas of convergence, visibility, and the contextual issues and concerns that arise in brain data research around these principles. These issues and concerns circulate around intimately connected areas which include ethics, human rights, regulations, policies and guidelines, and participatory governance. Also, key contextual insights around animal research and ethics were identified. The research identifies key principles, issues, and concerns that need to be addressed in advancing the development of a framework for global brain data governance. By presenting contextual insights from neuroscientists across regions, the study contributes to informing discussions and shaping policies aimed at promoting responsible and ethical practices in brain data research. The research answers the call for a cross cultural study of global brain data governance and the results of the study will assist in understanding the issues and concerns that arise in brain data governance. (shrink)

The potential to collect brain data more directly, with higher resolution, and in greater amounts has heightened worries about mental and brain privacy. In order to manage the risks to individuals posed by these privacy challenges, some have suggested codifying new privacy rights, including a right to “mental privacy.” In this paper, we consider these arguments and conclude that while neurotechnologies do raise significant privacy concerns, such concerns are—at least for now—no different from those raised by other well-understood data collection (...) technologies, such as gene sequencing tools and online surveillance. To better understand the privacy stakes of brain data, we suggest the use of a conceptual framework from information ethics, Helen Nissenbaum’s “contextual integrity” theory. To illustrate the importance of context, we examine neurotechnologies and the information flows they produce in three familiar contexts—healthcare and medical research, criminal justice, and consumer marketing. We argue that by emphasizing what is distinct about brain privacy issues, rather than what they share with other data privacy concerns, risks weakening broader efforts to enact more robust privacy law and policy. (shrink)

International institutions such as UNESCO are deliberating on a new standard setting instrument for neurotechnologies. This will likely lead to the adoption of a soft law document which will be the first global document specifically tailored to neurotechnologies, setting the tone for further international or domestic regulations. While some stakeholders have been consulted, these developments have so far evaded the broader attention of the neuroscience, neurotech, and neuroethics communities. To initiate a broader debate, this target article puts to discussion twenty-five (...) considerations and desiderata for recognition by a future instrument. They are formulated at different levels of abstraction, from the big picture to technical details, seek to widen the perspective of preparatory reports and transcend the narrow debate about “neurorights” which overshadows many richer and more relevant aspects. These desiderata are not an exhaustive enumeration but a starting point for discussions about what deserves and what requires protection by an international instrument. (shrink)

As scholars envision a new regulatory or statutory neurorights schema it is important to imagine unintended consequences if reforms are implemented before their implications are fully understood. This paper critically evaluates provisions proposed for a new Chilean Constitution and evaluates this movement against efforts to improve the diagnosis of, and treatment for, individuals with disorders of consciousness within the broader context of disability law, international human rights, and a capabilities approach to health justice as advanced by Amartya Sen and Martha (...) Nussbaum. Framed in this way, any neurorights regime would need to satisfy several criteria. First it would be obliged to balance both positive and negative rights in the furtherance of human capabilities. Second, it would need to be future oriented and informed about the science it sought to regulate and not fall prey to science fiction fantasies that remain ungrounded in reality. Third, it would need to be specific and avoid generalizations that would lead to conceptual confusion and litigation that could delay scientific progress. Finally, it would need to harmonize novel neurorights with long-established norms in international disability and human rights law. A failure to meet these criteria will destine any novel neurorights regime to the periphery. At this juncture Chile’s nascent constitutional venture into neurorights fails to satisfy these criteria. While there yet may be a role for a more capacious and bivalent articulation of neurorights that account for capabilities and precedent, the current Chilean neurorights reforms are vague and premature. As such they should undergo additional scholarly scrutiny and should not be adopted by other jurisdictions. (shrink)

Advances in neurotechnologies, artificial intelligence (AI) and Big Data analytics are allowing interpretation of patterns from brain data to identify and even predict and manipulate mental states. Furthermore, there are avenues through which brain data can move into the consumer sphere, be reidentified and brokered. In response to these developments, there have been a number of approaches proposed to strengthen protections of brain data. To better understand the landscape of brain data protection discussions, we conducted a scoping review to identify (...) the rationales for establishing brain data protections and the proposals for protecting brain data offered in the ethics and neuroscience literature. To draw comparisons, we also surveyed the rationales given in the literature for the protection of sensitive behavioral inferences drawn from other types of personal data and associated approaches to achieving protection. This systematic examination of the rationale behind heightened protection for brain data should be useful to clarify the functional and conceptual bases given for brain data protection and to provide a better grounding for evaluating how the different approaches to brain data protection address these concerns. (shrink)

Neurotechnologies broadly understood are tools that have the capability to read, record and modify our mental activity by acting on its brain correlates. The emergence of increasingly powerful and sophisticated techniques has given rise to the proposal to introduce new rights specifically directed to protect mental privacy, freedom of thought, and mental integrity. These rights, also proposed as basic human rights, are conceived in direct relation to tools that threaten mental privacy, freedom of thought, mental integrity, and personal identity. In (...) this paper, our goal is to give a philosophical foundation to a specific right that we will call right to mental integrity. It encapsulates both the classical concepts of privacy and non-interference in our mind/brain. Such a philosophical foundation refers to certain features of the mind that hitherto could not be reached directly from the outside: intentionality, first-person perspective, personal autonomy in moral choices and in the construction of one's narrative, and relational identity. A variety of neurotechnologies or other tools, including artificial intelligence, alone or in combination can, by their very availability, threaten our mental integrity. Therefore, it is necessary to posit a specific right and provide it with a theoretical foundation and justification. It will be up to a subsequent treatment to define the moral and legal boundaries of such a right and its application. (shrink)

Progress in neurotechnology and Artificial Intelligence (AI) provides unprecedented insights into the human brain. There are increasing possibilities to influence and measure brain activity. These developments raise multifaceted ethical and legal questions. The proponents of neurorights argue in favour of introducing new human rights to protect mental processes and brain data. This article discusses the necessity and advantages of introducing new human rights focusing on the proposed new human right to mental self-determination and the right to freedom of thought as (...) enshrined in Art.18 International Covenant on Civil and Political Rights (ICCPR) and Art. 9 European Convention on Human Rights (ECHR). I argue that the right to freedom of thought can be coherently interpreted as providing comprehensive protection of mental processes and brain data, thus offering a normative basis regarding the use of neurotechnologies. Besides, I claim that an evolving interpretation of the right to freedom of thought is more convincing than introducing a new human right to mental self-determination. (shrink)

This paper provides a justificatory rationale for recommending the inclusion of imagined future use cases in neurotechnology development processes, specifically for legal and policy ends. Including detailed imaginative engagement with future applications of neurotechnology can serve to connect ethical, legal, and policy issues potentially arising from the translation of brain stimulation research to the public consumer domain. Futurist scholars have for some time recommended approaches that merge creative arts with scientific development in order to theorise possible futures toward which current (...) trends in technology development might be steered. Taking a creative, imaginative approach like this in the neurotechnology context can help move development processes beyond considerations of device functioning, safety, and compliance with existing regulation, and into an active engagement with potential future dynamics brought about by the emergence of the neurotechnology itself. Imagined scenarios can engage with potential consumer uses of devices that might come to challenge legal or policy contexts. An anticipatory, creative approach can imagine what such uses might consist in, and what they might imply. Justifying this approach also prompts a co-responsibility perspective for policymaking in technology contexts. Overall, this furnishes a mode of neurotechnology’s emergence that can avoid crises of confidence in terms of ethico-legal issues, and promote policy responses balanced between knowledge, values, protected innovation potential, and regulatory safeguards. (shrink)

A pressing worry in the ongoing neurorights debate is the language used to advocate for newly proposed rights. This paper addresses this concern by first examining the partial and ambiguous associations between mind reading and neurotechnology, often cited by advocates in support of the right to mental privacy. Secondly, it addresses the conceptual foundations of mind reading, distinguishing between natural, digital, and neurotechnological forms. These distinctions serve to highlight the normative parallels in privacy vulnerabilities between neurotechnology and other mind-reading methods, (...) with an emphasis on multimodal digital systems. I suggest that authentic safeguards for the mental realm demand an expansion of the protective ambit beyond brain-targeted devices to recognize the spectrum of mind-reading applications. Ultimately, this urges re-evaluation of the scope and justification of a right to mental privacy owing to the need for coherent frameworks in an increasingly interconnected digital landscape. (shrink)

As is usually the case with other topics addressed by neuroethics, a rigorous analysis of neurorights requires an interdisciplinary approach. In response to this need and in the context of the global expansion of regulatory initiatives on neurorights, we coordinated, under the auspices of the International Center for Neuroscience and Ethics (CINET), an introductory course on neurorights from a neuroscientific perspective. The course, aimed at sixty students from diverse backgrounds (neuroscience, psychology, and law, among others), consisted of a 10-hr training (...) that showed the current approaches and discussions on neurorights and outlined cutting-edge technologies to register, analyze, and manipulate human brain activity from a realistic stance. The course succeeded in discarding some concerns and uncovering others not frequently found in the neurorights discussions. The most pressing issues identified were protecting brain data privacy, combating bias in algorithms used in neurotechnology, and improving informed consent mechanisms for interventions with invasive neuroscientific techniques. (shrink)