•  6
    Consent as a compositional act – a framework that provides clarity for the retention and use of data
    with Minerva C. Rivas Velarde, Christian Lovis, Caroline Samer, and Samia Hurst
    Philosophy, Ethics, and Humanities in Medicine 19 (1): 1-10. 2024.
    Background Informed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understanding of the informed consent as a compositional act. This conceptualisation departs from a modular conceptualisation of informed consent procedures. Methods This paper is a conceptual analysis that explores what …Read more
  •  1
    The global landscape of AI ethics guidelines
    with A. Jobin and E. Vayena
    Nature Machine Intelligence 1. 2019.
  •  16
    Consent as a compositional act – a framework that provides clarity for the retention and use of data
    with Minerva C. Rivas Velarde, Christian Lovis, Caroline Samer, and Samia Hurst
    Philosophy, Ethics and Humanities in Medicine 19 (1): 1-10. 2024.
    Background Informed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understanding of the informed consent as a compositional act. This conceptualisation departs from a modular conceptualisation of informed consent procedures. Methods This paper is a conceptual analysis that explores what …Read more
  •  43
    Why converging technologies need converging international regulation
    with Dirk Helbing
    Ethics and Information Technology 26 (1): 1-11. 2024.
    Emerging technologies such as artificial intelligence, gene editing, nanotechnology, neurotechnology and robotics, which were originally unrelated or separated, are becoming more closely integrated. Consequently, the boundaries between the physical-biological and the cyber-digital worlds are no longer well defined. We argue that this technological convergence has fundamental implications for individuals and societies. Conventional domain-specific governance mechanisms have become ineffective. In…Read more
  •  4
    Technologien zur Förderung der Autonomie von Menschen mit Demenz
    In Mathias Lindenau & Marcel Meier Kressig (eds.), Autonomie: Maßstab, Ideal oder Illusion? Vadian Lectures Band 9, Transcript Verlag. pp. 91-116. 2023.
  • Cambridge Handbook of Information Technology, Life Sciences and Human Rights (edited book)
    with O. Pollicino, L. Liguori, R. Andorno, and E. Stefanini
  •  46
    On Artificial Intelligence and Manipulation
    Topoi 42 (3): 833-842. 2023.
    The increasing diffusion of novel digital and online sociotechnical systems for arational behavioral influence based on Artificial Intelligence (AI), such as social media, microtargeting advertising, and personalized search algorithms, has brought about new ways of engaging with users, collecting their data and potentially influencing their behavior. However, these technologies and techniques have also raised concerns about the potential for manipulation, as they offer unprecedented capabilities…Read more
  •  68
    Minding Rights: Mapping Ethical and Legal Foundations of ‘Neurorights’
    Cambridge Quarterly of Healthcare Ethics 32 (4): 461-481. 2023.
    The rise of neurotechnologies, especially in combination with artificial intelligence (AI)-based methods for brain data analytics, has given rise to concerns around the protection of mental privacy, mental integrity and cognitive liberty – often framed as “neurorights” in ethical, legal, and policy discussions. Several states are now looking at including neurorights into their constitutional legal frameworks, and international institutions and organizations, such as UNESCO and the Council of Eur…Read more
  •  29
    Synthetic Biology and the Translational Imperative (review)
    with Marc Folcher, Bernice Simone Elger, and Raheleh Heidari Feidt
    Science and Engineering Ethics 25 (1): 33-52. 2019.
    Advances at the interface between the biological sciences and engineering are giving rise to emerging research fields such as synthetic biology. Harnessing the potential of synthetic biology requires timely and adequate translation into clinical practice. However, the translational research enterprise is currently facing fundamental obstacles that slow down the transition of scientific discoveries from the laboratory to the patient bedside. These obstacles including scarce financial resources an…Read more
  •  95
    Towards a Governance Framework for Brain Data
    with Joseph J. Fins, Ralf J. Jox, Fabrice Jotterand, Silja Voeneky, Roberto Andorno, Tonio Ball, Claude Castelluccia, Ricardo Chavarriaga, Hervé Chneiweiss, Agata Ferretti, Orsolya Friedrich, Samia Hurst, Grischa Merkel, Fruzsina Molnár-Gábor, Jean-Marc Rickli, James Scheibner, Effy Vayena, Rafael Yuste, and Philipp Kellmeyer
    Neuroethics 15 (2): 1-14. 2022.
    The increasing availability of brain data within and outside the biomedical field, combined with the application of artificial intelligence (AI) to brain data analysis, poses a challenge for ethics and governance. We identify distinctive ethical implications of brain data acquisition and processing, and outline a multi-level governance framework. This framework is aimed at maximizing the benefits of facilitated brain data collection and further processing for science and medicine whilst minimizi…Read more
  •  4
    3 The Neuroenhancement Continuum and the Minimal Rule
    In Emilian Mihailov, Tenzin Wangmo, Victoria Federiuc & Bernice S. Elger (eds.), Contemporary Debates in Bioethics: European Perspectives, De Gruyter Open. pp. 23-36. 2018.
  •  19
    The past few years have witnessed several media-covered cases involving citizens actively engaging in the pursuit of experimental treatments for their medical conditions—or those of their loved ones—in the absence of established standards of therapy. This phenomenon is particularly observable in patients with rare genetic diseases, as the development of effective therapies for these disorders is hindered by the limited profitability and market value of pharmaceutical research. Sociotechnical tre…Read more
  •  33
    Artificial Intelligence in Clinical Neuroscience: Methodological and Ethical Challenges
    with Karolina Ignatiadis
    American Journal of Bioethics Neuroscience 11 (2): 77-87. 2020.
  •  49
    Democratizing cognitive technology: a proactive approach
    Ethics and Information Technology 21 (4): 267-280. 2019.
    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 b…Read more
  •  33
    Ethical concerns with the use of intelligent assistive technology: findings from a qualitative study with professional stakeholders
    with Tenzin Wangmo, Mirjam Lipps, and Reto W. Kressig
    BMC Medical Ethics 20 (1): 1-11. 2019.
    Background Advances in artificial intelligence, robotics and wearable computing are creating novel technological opportunities for mitigating the global burden of population ageing and improving the quality of care for older adults with dementia and/or age-related disability. Intelligent assistive technology is the umbrella term defining this ever-evolving spectrum of intelligent applications for the older and disabled population. However, the implementation of IATs has been observed to be sub-o…Read more
  •  44
    Digital Medicine and Ethics: Rooting for Evidence
    American Journal of Bioethics 18 (9): 49-51. 2018.
  •  39
    Misplaced Trust and Distrust: How Not to Engage with Medical Artificial Intelligence
    with Georg Starke
    Cambridge Quarterly of Healthcare Ethics 1-10. forthcoming.
    Artificial intelligence (AI) plays a rapidly increasing role in clinical care. Many of these systems, for instance, deep learning-based applications using multilayered Artificial Neural Nets, exhibit epistemic opacity in the sense that they preclude comprehensive human understanding. In consequence, voices from industry, policymakers, and research have suggested trust as an attitude for engaging with clinical AI systems. Yet, in the philosophical and ethical literature on medical AI, the notion …Read more
  •  19
    Correction to: Synthetic Biology and the Translational Imperative
    with Marc Folcher, Bernice Simone Elger, and Raheleh Heidari Feidt
    Science and Engineering Ethics 25 (1): 53-53. 2019.
    The author group of above-mentioned review paper was incorrectly published in the online article.
  •  96
    Towards new human rights in the age of neuroscience and neurotechnology
    Life Sciences, Society and Policy 13 (1): 1-27. 2017.
    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 t…Read more
  •  18
    BackgroundIncreasingly, hospitals and research institutes are developing technical solutions for sharing patient data in a privacy preserving manner. Two of these technical solutions are homomorphic encryption and distributed ledger technology. Homomorphic encryption allows computations to be performed on data without this data ever being decrypted. Therefore, homomorphic encryption represents a potential solution for conducting feasibility studies on cohorts of sensitive patient data stored in …Read more
  •  57
    Ethics review of big data research: What should stay and what should be reformed?
    with Effy Vayena, Minerva Rivas Velarde, Mahsa Shabani, Gabrielle Samuel, Camille Nebeker, S. Matthew Liao, Peter Kleist, Walter Karlen, Jeff Kahn, Phoebe Friesen, Bobbie Farsides, Edward S. Dove, Alessandro Blasimme, Mark Sheehan, and Agata Ferretti
    BMC Medical Ethics 22 (1): 1-13. 2021.
    BackgroundEthics 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 textIn this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical…Read more
  •  201
    Brain–computer interfacing technologies are used as assistive technologies for patients as well as healthy subjects to control devices solely by brain activity. Yet the risks associated with the misuse of these technologies remain largely unexplored. Recent findings have shown that BCIs are potentially vulnerable to cybercriminality. This opens the prospect of “neurocrime”: extending the range of computer-crime to neural devices. This paper explores a type of neurocrime that we call brain-hackin…Read more
  •  28
    Correction to: Synthetic Biology and the Translational Imperative
    with Raheleh Heidari Feidt, Bernice Simone Elger, and Marc Folcher
    Science and Engineering Ethics 25 (1): 53-53. 2019.
    The author group of above-mentioned review paper was incorrectly published in the online article.
  •  24
    Direct-to-Consumer Neurotechnology: What Is It and What Is It for?
    American Journal of Bioethics Neuroscience 10 (4): 149-151. 2019.
  •  24
    Ethical Design of Intelligent Assistive Technologies for Dementia: A Descriptive Review
    with Tenzin Wangmo, Fabrice Jotterand, Reto W. Kressig, and Bernice Elger
    Science and Engineering Ethics 24 (4): 1035-1055. 2018.
    The use of Intelligent Assistive Technology in dementia care opens the prospects of reducing the global burden of dementia and enabling novel opportunities to improve the lives of dementia patients. However, with current adoption rates being reportedly low, the potential of IATs might remain under-expressed as long as the reasons for suboptimal adoption remain unaddressed. Among these, ethical and social considerations are critical. This article reviews the spectrum of IATs for dementia and inve…Read more
  •  34
    Synthetic Biology and the Translational Imperative
    with Raheleh Heidari Feidt, Bernice Simone Elger, and Marc Folcher
    Science and Engineering Ethics 25 (1): 33-52. 2019.
    Advances at the interface between the biological sciences and engineering are giving rise to emerging research fields such as synthetic biology. Harnessing the potential of synthetic biology requires timely and adequate translation into clinical practice. However, the translational research enterprise is currently facing fundamental obstacles that slow down the transition of scientific discoveries from the laboratory to the patient bedside. These obstacles including scarce financial resources an…Read more