Marcello Ienca

Last Name

Ienca

First Name

Marcello

ORCID

0000-0001-8835-5444

Show all metadata

Search Results

Publications 1 - 10 of 53

Why converging technologies need converging international regulation
Helbing, Dirk; Ienca, Marcello (2024)
Ethics and Information Technology
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 this paper we provide an overview of the ethical, societal and policy challenges of technological convergence. Particularly, we scrutinize the adequacy of domain-specific governance mechanisms in the face of such integrated technologies and highlight their growing ineffectiveness. Furthermore, we propose a comprehensive governance framework that is anticipatory, inclusive, and resilient. Central to this framework is the principle of participatory governance, which calls for a proactive engagement of all stakeholders, including those from marginalized and vulnerable populations, ensuring that their voices and concerns shape the trajectory of technological development. The framework emphasizes the need for protective measures that preemptively address potential risks and inequities that may arise from the adoption and integration of emerging technologies. Based on a detailed analysis of case studies and current governance models, we present and discuss a set of ten actionable recommendations. These are designed to facilitate the transition towards a governance approach that not only respects individual autonomy and privacy, but also fosters a collective responsibility towards sustainable and fair technological progress. By placing human dignity, societal welfare and the protection of the most vulnerable at the center of technological innovation, we advocate for a future where convergence is synonymous with progress that is both ethically grounded and universally beneficial.
The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study
Ferretti, Agata; Ienca, Marcello; Rivas Velarde, Rivas; et al. (2021)
Journal of Empirical Research on Human Research Ethics
Big data trends in health research challenge the oversight mechanism of the Research Ethics Committees (RECs). The traditional standards of research quality and the mandate of RECs illuminate deficits in facing the computational complexity, methodological novelty, and limited auditability of these approaches. To better understand the challenges facing RECs, we explored the perspectives and attitudes of the members of the seven Swiss Cantonal RECs via semi-structured qualitative interviews. Our interviews reveal limited experience among REC members with the review of big data research, insufficient expertise in data science, and uncertainty about how to mitigate big data research risks. Nonetheless, RECs could strengthen their oversight by training in data science and big data ethics, complementing their role with external experts and ad hoc boards, and introducing precise shared practices.
On the responsible use of digital data to tackle the COVID-19 pandemic
Ienca, Marcello; Vayena, Effy (2020)
Nature Medicine
Digital Predictors of Morbidity, Hospitalization, and Mortality Among Older Adults: A Systematic Review and Meta-Analysis
Daniolou, Sofia; Rapp, Andreas; Haase, Celina; et al. (2021)
Frontiers in Digital Health
The widespread adoption of digital health technologies such as smartphone-based mobile applications, wearable activity trackers and Internet of Things systems has rapidly enabled new opportunities for predictive health monitoring. Leveraging digital health tools to track parameters relevant to human health is particularly important for the older segments of the population as old age is associated with multimorbidity and higher care needs. In order to assess the potential of these digital health technologies to improve health outcomes, it is paramount to investigate which digitally measurable parameters can effectively improve health outcomes among the elderly population. Currently, there is a lack of systematic evidence on this topic due to the inherent heterogeneity of the digital health domain and the lack of clinical validation of both novel prototypes and marketed devices. For this reason, the aim of the current study is to synthesize and systematically analyse which digitally measurable data may be effectively collected through digital health devices to improve health outcomes for older people. Using a modified PICO process and PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) framework, we provide the results of a systematic review and subsequent meta-analysis of digitally measurable predictors of morbidity, hospitalization, and mortality among older adults aged 65 or older. These findings can inform both technology developers and clinicians involved in the design, development and clinical implementation of digital health technologies for elderly citizens.
Considerations for ethics review of big data health research: A scoping review
Ienca, Marcello; Ferretti, Agata; Hurst, Samia; et al. (2018)
PLoS ONE
Dual use in the 21st century: emerging risks and global governance
Ienca, Marcello; Vayena, Effy (2018)
Swiss Medical Weekly
Dual use research of concern (DURC) is defined by the World Health Organization as “life sciences research that is intended for benefit, but which might easily be misapplied to do harm.” Ethical and policy discussions on DURC span the past three decades. Today, however, new and emerging technologies and associated sociocultural transformations within the scientific community are reshaping the current risk scenario. This paper identifies three major trends that are likely to characterise dual use dilemmas in the near future: the diversification of dual use domains, the digitalisation of potential threats and the proliferation of actors. This analysis illustrates an increasingly heterogeneous and fragmented risk scenario, which can hardly be effectively governed top-down from a centralised authority. We propose that in order to meet the critical challenges of dual use in the 21st century, a global and distributed governance is needed. In contrast to globally binding sets of legal mechanisms administered by a central and hierarchical authority supported by leading powers, we suggest a global and decentralised governance architecture encompassing multilevel, multipolar and bottom-up strategies that can stretch across a spectrum of stakeholders and scientific domains in an agile, proactive and adaptive manner. Finally, we discuss how Switzerland can take a leading role in the promotion and development of this global governance architecture.
Ethics review of big data research: What should stay and what should be reformed?
Ferretti, Agata; Ienca, Marcello; Sheehan, Mark; et al. (2021)
BMC Medical Ethics
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.
Digital Mental Health for Young People: A Scoping Review of Ethical Promises and Challenges
Wies, Blanche; Landers, Constantin; Ienca, Marcello (2021)
Frontiers in Digital Health
Mental health disorders are complex disorders of the nervous system characterized by a behavioral or mental pattern that causes significant distress or impairment of personal functioning. Mental illness is of particular concern for younger people. The WHO estimates that around 20% of the world's children and adolescents have a mental health condition, a rate that is almost double compared to the general population. One approach toward mitigating the medical and socio-economic effects of mental health disorders is leveraging the power of digital health technology to deploy assistive, preventative, and therapeutic solutions for people in need. We define “digital mental health” as any application of digital health technology for mental health assessment, support, prevention, and treatment. However, there is only limited evidence that digital mental health tools can be successfully implemented in clinical settings. Authors have pointed to a lack of technical and medical standards for digital mental health apps, personalized neurotechnology, and assistive cognitive technology as a possible cause of suboptimal adoption and implementation in the clinical setting. Further, ethical concerns have been raised related to insufficient effectiveness, lack of adequate clinical validation, and user-centered design as well as data privacy vulnerabilities of current digital mental health products. The aim of this paper is to report on a scoping review we conducted to capture and synthesize the growing literature on the promises and ethical challenges of digital mental health for young people aged 0–25. This review seeks to survey the scope and focus of the relevant literature, identify major benefits and opportunities of ethical significance (e.g., reducing suffering and improving well-being), and provide a comprehensive mapping of the emerging ethical challenges. Our findings provide a comprehensive synthesis of the current literature and offer a detailed informative basis for any stakeholder involved in the development, deployment, and management of ethically-aligned digital mental health solutions for young people.
Ethical challenges associated with health-related big data research
Ienca, Marcello (2019)
European Journal of Public Health
Big data trends in biomedical and public health research hold promise for improving prevention, enabling earlier diagnosis, optimizing resource allocation, and delivering more tailored treatments to patients with specific disease trajectories. At the same time, due to their methodological novelty, algorithmic complexity and reliance on data mining for knowledge generation, big data approaches raise ethical challenges. This talk presents an overview of the major ethical challenges associated with health-related big data research. These include demarcating the boundary between personal health data and non-health data, re-defining the notion of private information, sustaining trust in health data sharing, preventing data-driven discrimination and ensuring a fair distribution of benefits and burdens among all stakeholders. Case studies from dementia research and public mental health will be discussed to illustrate these challenges and provide an ethical assessment. Furthermore, this talk will provide an overview of the normative proposals that have been recently advanced to align health-related big data research with established regulatory frameworks such as data protection regulation, regulation on human subject research and ethics review. Based on this analysis, suggestions will be made on how to maximise the benefits of big data for public health while minimizing ethical risks.
Ethical concerns with the use of intelligent assistive technology: findings from a qualitative study with professional stakeholders
Wangmo, Tenzin; Lipps, Mirjam; Kressig, Reto W.; et al. (2019)
BMC Medical Ethics
Background Advances in artificial intelligence (AI), 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 (IAT) 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-optimal due to a number of barriers in the translation of novel applications from the designing labs to the bedside. Furthermore, since these technologies are designed to be used by vulnerable individuals with age- and multi-morbidity-related frailty and cognitive disability, they are perceived to raise important ethical challenges, especially when they involve machine intelligence, collect sensitive data or operate in close proximity to the human body. Thus, the goal of this paper is to explore and assess the ethical issues that professional stakeholders perceive in the development and use of IATs in elderly and dementia care. Methods We conducted a multi-site study involving semi-structured qualitative interviews with researchers and health professionals. We analyzed the interview data using a descriptive thematic analysis to inductively explore relevant ethical challenges. Results Our findings indicate that professional stakeholders find issues of patient autonomy and informed consent, quality of data management, distributive justice and human contact as ethical priorities. Divergences emerged in relation to how these ethical issues are interpreted, how conflicts between different ethical principles are resolved and what solutions should be implemented to overcome current challenges. Conclusions Our findings indicate a general agreement among professional stakeholders on the ethical promises and challenges raised by the use of IATs among older and disabled users. Yet, notable divergences persist regarding how these ethical challenges can be overcome and what strategies should be implemented for the safe and effective implementation of IATs. These findings provide technology developers with useful information about unmet ethical needs. Study results may guide policy makers with firsthand information from relevant stakeholders about possible solutions for ethically-aligned technology governance.

Publications 1 - 10 of 53

Marcello Ienca

Last Name

First Name

ORCID

Organisational unit

Filters

Search Results