Ethics framework for citizen science and public and patient participation in research

Abstract

Background Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework that offers a lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. Methods We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. Results Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. Conclusions Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen science to act responsibly and offers a heuristic guide to reflect on ethics. Reflection on ethics is a pathway towards ethical citizen science, especially if researchers collaboratively reflect in partnership with non-academics who are subject to the moral issue.

An Ethics Framework for Evaluating Ownership Practices in Biomedical Citizen Science

“…To address this gap, we propose a framework for evaluating ownership practices in biomedical citizen science comprising four considerations: reciprocal treatment, relative treatment, risk-benefit assessment, and reasonable expectations (Table 2). As described below, the considerations are rooted in traditional research ethics principles of respect for persons, beneficence, and justice, but consistent with the literature, their application pays special attention to the emphasis in citizen science on participatory experience, inclusivity, balance of power, and trust (Chesser, Porter, and Tuckett 2020;Groot and Abma 2022;Rasmussen 2019Rasmussen , 2021Wiggins and Wilbanks 2019).…”

Ethics of ‘Counting Me In’: framing the implications of direct-to-patient genomics research

“…The following sections discuss several salient issues stemming from foundational ethical principles of human subjects research and highlight current ethics gaps which are not and perhaps cannot be sufficiently covered by traditional research ethics. This work does not attempt to propose solutions, but rather emphasise areas where researchers and participants alike should work together to identify shared values and create new frameworks of ethical conduct,16 17 in keeping with the goal of patient engagement 18…”

A Threshold for Citizen Science Projects: Complex Thinking as a Driver of Holistic Development

“…Evidence of this can be observed in the increasing number of scientific articles published in recent years, indicating a growing trend in the subject. The broad focus spectrum includes the following clusters: CS participant engagement (Fischer et al, 2021;Haklay, 2018;Lotfian et al, 2020;Wiggins & Crowston, 2011); ethical issues in CS (Groot & Abma, 2022;Resnik et al, 2015); virtual CS projects (Reed et al, 2012); incorporating communities in CS (García-Holgado et al, 2020;Katapally, 2019;Nardi et al, 2021;Pandya, 2012); CS data quality improvement (Antelio et al, 2012;Cerquides et al, 2021;Garriga et al, 2017); evaluation and design of CS programs (Bolici & Colella, 2019;Chase & Levine., 2016;Hennig et al, 2019); prevention and control (Asingizwe et al, 2018;Coulson & Woods, 2021;Li et al, 2019;Yang et al, 2019); education & research (Hiller et al, 2019;Spasiano et al, 2021); surveillance and monitoring via CS (Arazy & Malkinson, 2021;Callaghan et al, 2020;Welvaert & Caley, 2016); CS data collecting & processing (Callaghan et al, 2021;Eagles-Smith, 2020;Hyvönen et al, 2021;Teng & Albayrak, 2017), CS and interest in developing critical thinking (Araújo et al, 2022;Belluigi & Cundill., 2017;Castell et al, 2021;Constant & Roberts, 2017) (See Figure 2).…”