Life scientists’ views and perspectives on the regulation of dual-use research of concern

In the early 2000s, several publications initiated a debate about the potential misuse of academic life science research. The debate was refueled in 2012, when two studies describing the engineering of human transmissive H5N1 bird flu virus were published. To facilitate the debate on dual-use research of concern (DURC) and regulatory measures, we interviewed life science researchers working in Switzerland about their views on DURC. The results indicate that all scientists interviewed were aware of the debate, however, few had reflected about dual-use aspects with regard to their own work. Although all respondents believed in freedom of research, a majority was supportive of some form of regulation of DURC. This article discusses the major implications of the study, especially regarding the implementation of regulatory measures. In addition, preliminary recommendations are given for raising awareness on DURC in the life sciences among researchers

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

Intelligent technologies for the aging brain: opportunities and challenges

Intelligent computing is rapidly reshaping healthcare. In light of the global burden of population aging and neurological disorders, dementia and elderly care are among the healthcare sectors that are most likely to benefit from this technological revolution. Trends in artificial intelligence, robotics, ubiquitous computing, neurotechnology and other branches of biomedical engineering are progressively enabling novel opportunities for technology-enhanced care. These Intelligent Assistive Technologies (IATs) open the prospects of supporting older adults with neurocognitive disabilities, maintain their independence, reduce the burden on caregivers and delay the need for long-term care (1, 2). While technology develops fast, yet little knowledge is available to patients and health professionals about the current availability, applicability, and capability of existing IATs. This thesis proposes a state-of-the-art analysis of IATs in dementia and elderly care. Our findings indicate that advances in intelligent technology are resulting in a rapidly expanding number and variety of assistive solutions for older adults and people with neurocognitive disabilities. However, our analysis identifies a number of challenges that negatively affect the optimal deployment and uptake of IATs among target users and care institutions. These include design issues, sub-optimal approaches to product development, translational barriers between lab and clinics, lack of adequate validation and implementation, as well as data security and cyber-risk weaknesses. Additionally, in virtue of their technological novelty, intelligent technologies raise a number of Ethical, Legal and Social Implications (ELSI). Therefore, a significant portion of this thesis is devoted to providing an early ethical Technology Assessment (eTA) of intelligent technology, hence contributing to preparing the terrain for its safe and ethically responsible adoption. This assessment is primarily focused on intelligent technologies at the human-machine interface, as these applications enable an unprecedented exposure of the intimate dimension of individuals to the digital infosphere. Issues of privacy, integrity, equality, and dual-use were addressed at the level of stakeholder analysis, normative ethics and human-rights law. Finally, this thesis is aimed at providing evidence-based recommendations for guiding participatory and responsible development in intelligent technology, and delineating governance strategies that maximize the clinical benefits of IATs for the aging world, while minimizing unintended risks

Hacia nuevos derechos humanos en la era de la neurociencia y la neurotecnología

Los rápidos avances en neurociencia y neurotecnología abren un conjunto de posibilidades sin precedentes en el acceso, colecta, diseminación y manipulación de datos del cerebro humano. Estos desarrollos plantean importantes desafíos a los derechos humanos que deben abordarse para evitar consecuencias no deseadas. Este trabajo evalúa las implicaciones de los diferentes usos de las neurotecnologías en relación a los derechos humanos y sugiere que el marco actual de derechos humanos puede no ser suficiente para responder a estos desafíos emergentes. Después de analizar la relación entre neurociencia y derechos humanos, identificamos cuatro nuevos derechos que pueden ser de gran relevancia en las próximas décadas: el derecho a la libertad cognitiva, el derecho a la privacidad mental, el derecho a la integridad mental y el derecho a la continuidad psicológica

Ethical, Legal and Social Issues of Big Data - A Comprehensive Overview

The ELSI White Paper is the final achievement of the ELSI Task Force for the National Research Programme “Big Data” (NRP 75). It is an informational document that provides an overview of the key ethical, legal, and social challenges of big data and provides guidance for the collection, use, and sharing of big data. The document aims to bring together the expertise of the ELSI Task Force members rather than exhaustively covering all topics in big data relating to ethical, legal, and social issues (ELSI). The white paper comprises two parts: main articles and commentaries on it. The main articles give an overview of the major concerns associated with the use of big data, based on the assessment of the participating researchers. The commentary articles either examine in depth one or more of the issues that are presented in the main articles or highlight other issues that are considered relevant by their authors but are not covered in the main articles. The main articles are divided into three sections corresponding to the three ELSI levels of analysis. In the section on ethics, Marcello Ienca explores the threat of big data to ethics commissions, privacy rights, personal autonomy, and equality in the healthcare sector and biomedical research. Bernice Elger focuses on the need to address informed consent differently and complement it with additional mechanisms in the big data context. In the legal section, Christophe Schneble explores whether current Swiss data protection laws adequately regulate and protect individuals’ data. Eleonora Viganò analyses the threat of big data to state sovereignty and explore the two contrasting acceptations of the term “digital sovereignty” in the context of big data. In the section on social issues, Markus Christen addresses the big data divide, namely, the uneven distribution of benefits and harms from big data and the connected issue of the transparency asymmetry between data givers and data owners. Michele Loi delves into the debate on fair algorithms, presenting the risks of discriminating against certain groups when adopting big data-based predictive algorithms, such as those for predicting inmates’ recidivism. The second part of the ELSI White Paper contains three commentaries. In the first, Mira Burri focuses on the viability of new approaches to global trade governance that seek to address big data issues and makes recommendations for a better informed and more proactive Swiss approach. In the second commentary, David Shaw explores the lack of protection for vulnerable groups in big data research and the temporospatial and moral distance between researchers and participants that increases the risk of exploitation. In the third commentary, Christian Hauser tackles big data from the perspective of business ethics and provides guidance to companies employing big data. Keywords: Big data, informed consent, data protection law, big data divide, digital sovereignty, health data, discrimination, big data research, big data in industry JEL Classification: O3, F1

Ethics review of big data research: what should stay and what should be reformed?

Background Ethics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts. Main text In this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC’s scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC’s way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science. Conclusions We believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large