Marcello Ienca

Towards new human rights in the age of neuroscience and neurotechnology

Rapid advancements in human neuroscience and neurotechnology open unprecedented possibilities for accessing, collecting, sharing and manipulating information from the human brain. Such applications raise important challenges to human rights principles that need to be addressed to prevent unintended consequences. This paper assesses the implications of emerging neurotechnology applications in the context of the human rights framework and suggests that existing human rights may not be sufficient to respond to these emerging issues. After analysing the relationship between neuroscience and human rights, we identify four new rights that may become of great relevance in the coming decades: the right to cognitive liberty, the right to mental privacy, the right to mental integrity, and the right to psychological continuity.

Social and Assistive Robotics in Dementia Care: Ethical Recommendations for Research and Practice

The steadily growing number of older adults with dementia worldwide poses a major challenge for global public health. The integration of robotics into both formal and informal dementia care opens up new possibilities for improving the life of patients and alleviating the burden on caregivers and the healthcare services. However, ethical, legal and social implications should be considered early in the development of assistive and social robots for dementia to prevent slow adoption, incorrect implementation and inappropriate use. This paper delineates the ethical landscape and provides recommendations for design and use aimed at protecting users and maximizing the benefit in assisting such vulnerable population.

From Healthcare to Warfare and Reverse: How Should We Regulate Dual-Use Neurotechnology?

Recent advances in military-funded neurotechnology and novel opportunities for misusing neurodevices show that the problem of dual use is inherent to neuroscience. This paper discusses how the neuroscience community should respond to these dilemmas and delineates a neuroscience-specific biosecurity framework. This neurosecurity framework involves calibrated regulation, (neuro)ethical guidelines, and awareness-raising activities within the scientific community.

Supporting Families and Children Living in the Shadow of Prisoners

The potential adverse effects of imprisonment on prisoners’ relatives and family still remain largely unexplored. This chapter provides a detailed analysis of the psychosocial impact of imprisonment on the families of detained persons. Starting from the direct experience in a correctional facility in Switzerland, the authors describe how the lives of families tend to change over the time of imprisonment and how this change is influenced by a number of factors. A special focus is attributed to the children of imprisoned parents, as they are often the most vulnerable persons collaterally affected by the experience of imprisonment. After providing a detailed analysis of these problems, the authors identify some important forms of support, including innovative strategies enabled by new information technology, which could be implemented by professionals and NGOs.

The Biopolitics of Neuroethics

Neuroethics is an interdisciplinary endeavor committed to promoting responsible innovation and ethical understanding in neuroscience and neurotechnology. As the field develops, closer examination will be needed concerning how neuroethics discourse could, either implicitly or explicitly, shape our brains and our minds, and ultimately, what it means to be human. Borrowing the notion of biopolitics from Michel Foucault, this chapter explores and critically examines the biopolitical dimension of neuroethics. In the first section, the concept of biopolitics is examined through the lens of Michel Foucault’s analysis with a particular focus on the politicization of science and technology. The second section outlines the key features of neuroethics and the main challenges of attempting to pinpoint the identity of the neuroethics community. The third section delineates some positive developments in establishing the field and in building a community of scholars and researchers interested in the ethical and social implications of advances in neuroscience. The fourth section provides a rationale as to why the neuroethics community has the moral obligation to scrutinize the socioeconomic motivations and political drives behind any research project to ensure both as much transparency as possible and state neutrality. The final section of the chapter discusses the challenges of establishing a dominant discourse in light of political and moral pluralism and suggests a potential approach (i.e., procedural ethics grounded on a deliberative democracy approach) to shape such discourse.

Big Data and Dementia: Charting the Route Ahead for Research, Ethics, and Policy

Emerging trends in pervasive computing and medical informatics are creating the possibility for large-scale collection, sharing, aggregation and analysis of unprecedented volumes of data, a phenomenon commonly known as big data. In this contribution, we review the existing scientific literature on big data approaches to dementia, as well as commercially available mobile-based applications in this domain. Our analysis suggests that big data approaches to dementia research and care hold promise for improving current preventive and predictive models, casting light on the etiology of the disease, enabling earlier diagnosis, optimizing resource allocation, and delivering more tailored treatments to patients with specific disease trajectories. Such promissory outlook, however, has not materialized yet, and raises a number of technical, scientific, ethical, and regulatory challenges. This paper provides an assessment of these challenges and charts the route ahead for research, ethics, and policy.

Correction to: Synthetic Biology and the Translational Imperative

The author group of above-mentioned review paper was incorrectly published in the online article.

Considerations for ethics review of big data health research: A scoping review

Big data trends in biomedical and health research enable large-scale and multi-dimensional aggregation and analysis of heterogeneous data sources, which could ultimately result in preventive, diagnostic and therapeutic benefit. The methodological novelty and computational complexity of big data health research raises novel challenges for ethics review. In this study, we conducted a scoping review of the literature using five databases to identify and map the major challenges of health-related big data for Ethics Review Committees (ERCs) or analogous institutional review boards. A total of 1093 publications were initially identified, 263 of which were included in the final synthesis after abstract and full-text screening performed independently by two researchers. Both a descriptive numerical summary and a thematic analysis were performed on the full-texts of all articles included in the synthesis. Our findings suggest that while big data trends in biomedicine hold the potential for advancing clinical research, improving prevention and optimizing healthcare delivery, yet several epistemic, scientific and normative challenges need careful consideration. These challenges have relevance for both the composition of ERCs and the evaluation criteria that should be employed by ERC members when assessing the methodological and ethical viability of health-related big data studies. Based on this analysis, we provide some preliminary recommendations on how ERCs could adaptively respond to those challenges. This exploration is designed to synthesize useful information for researchers, ERCs and relevant institutional bodies involved in the conduction and/or assessment of health-related big data research.

Brain leaks and consumer neurotechnology

Greater safeguards are needed to address the personal safety, security and privacy risks arising from increasing adoption of neurotechnology in the consumer realm.

Democratizing cognitive technology: a proactive approach

Cognitive technology is an umbrella term sometimes used to designate the realm of technologies that assist, augment or simulate cognitive processes or that can be used for the achievement of cognitive aims. This technological macro-domain encompasses both devices that directly interface the human brain as well as external systems that use artificial intelligence to simulate or assist (aspects of) human cognition. As they hold the promise of assisting and augmenting human cognitive capabilities both individually and collectively, cognitive technologies could produce, in the next decades, a significant effect on human cultural evolution. At the same time, due to their dual-use potential, they are vulnerable to being coopted by State and non-State actors for non-benign purposes (e.g. cyberterrorism, cyberwarfare and mass surveillance) or in manners that violate democratic values and principles. Therefore, it is the responsibility of technology governance bodies to align the future of cognitive technology with democratic principles such as individual freedom, avoidance of centralized, equality of opportunity and open development. This paper provides a preliminary description of an approach to the democratization of cognitive technologies based on six normative ethical principles: avoidance of centralized control, openness, transparency, inclusiveness, user-centeredness and convergence. This approach is designed to universalize and evenly distribute the potential benefits of cognitive technology and mitigate the risk that such emerging technological trend could be coopted by State or non-State actors in ways that are inconsistent with the principles of liberal democracy or detrimental to individuals and groups.