Ethics parallel research: an approach for (early) ethical guidance of biomedical innovation

Abstract

Background: Our human societies and certainly also (bio) medicine are more and more permeated with technology. There seems to be an increasing awareness among bioethicists that an effective and comprehensive approach to ethically guide these emerging biomedical innovations into society is needed. Such an approach has not been spelled out yet for bioethics, while there are frequent calls for ethical guidance of biomedical innovation, also by biomedical researchers themselves. New and emerging biotechnologies require anticipation of possible effects and implications, meaning the scope is not evaluative after a technology has been fully developed or about hypothetical technologies, but real-time for a real biotechnology. Main text: In this paper we aim to substantiate and discuss six ingredients that we increasingly see adopted by ethicists and that together constitute "ethics parallel research". This approach allows to fulfil two aims: guiding the development process of technologies in biomedicine and providing input for the normative evaluation of such technologies. The six ingredients of ethics parallel research are: (1) disentangling wicked problems, (2) upstream or midstream ethical analysis, (3) ethics from within, (4) inclusion of empirical research, (5) public participation and (6) mapping societal impacts, including hard and soft impacts. We will draw on gene editing, organoid technology and artificial intelligence as examples to illustrate these six ingredients. Conclusion: Ethics parallel research brings together these ingredients to ethically analyse and proactively or parallel guide technological development. It widens the roles and judgements from the ethicist to a more anticipatory and constructively guiding role. Ethics parallel research is characterised by a constructive, rather than a purely critical perspective, it focusses on developing best-practices rather than outlining worst practice, and draws on insights from social sciences and philosophy of technology.

Ethical Issues of Digital Twins for Personalized Health Care Service: Preliminary Mapping Study

“…For instance, researchers may consider adopting the embedded ethics approach proposed by McLennan et al [ 58 ] to investigate the ethicality of digital twins for personalized health care services with developers and stakeholders. For researchers interested in developing ethical guidance for emerging digital twin applications, the ethics parallel research approach advocated by Jongsma and Bredenoord [ 59 ] is also worth adopting.…”

Developing the building blocks to elucidate the impact of the urban exposome on cardiometabolic-pulmonary disease

“…For example, to weigh the proportionality of the potentially large benefits and harm, evaluate the goals, and investigate responsibilities. Ethics parallel research 17 is therefore incorporated from the beginning of the project in order to enhance ethically sound innovation, which has taken into account the preferences and needs of relevant stakeholders.…”

“…EXPANSE therefore will employ ethics parallel research, which is an approach for the early ethical guidance of novel (bio)medical research and innovation. 17 We will identify and evaluate the ethical challenges raised by EXPANSE using an interdisciplinary approach that deploys empirical and normative methods as well as public and patient involvement (PPI) elements. The inclusion of a diverse group of citizens in the early phases of exposome research will enable us to understand and map how they anticipate exposome research will affect their lives and realities as well as their hopes and fears.…”

Educating for Responsible Research Practice in Biomedical Sciences

“…This parallel evaluation makes it possible to guide and redirect research efforts during the process, rather than solely providing a hindsight assessment. To make sure this evaluation is comprehensive, experts from different disciplines (e.g., ethicists, social scientists, and legal experts) have to work in close collaboration with biomedical scientists (Jongsma & Bredenoord, 2020). However, to make these collaborations successful, biomedical scientists need competencies that are not usually part of their educational program.…”

“…In addition to recognizing perspectives from different scientific disciplines, students should also recognize the added value of non-scientific forms of knowledge, such as experiential and cultural knowledge. As science does not operate in a vacuum, society should be involved in the production and evaluation of new scientific knowledge (Jasanoff, 2004). In particular, research that concerns new treatment methods should include patients' experience to increase the relevance and quality of the research (Caron-Flinterman et al, 2005).…”