Ethics and Participatory Health Research

Groot, Barbara; Abma, Tineke

doi:10.1007/978-3-030-48277-0_30-1

Cited by 6 publications

(4 citation statements)

References 18 publications

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“…Most cases were embedded in the Centre of Client Experiences, CvC for short ( www.centrumvoorclientervaringen.com ), a platform that stimulates ethical reflection on projects with a participatory approach. This is a platform in which citizens, managers from care institutions, researchers, municipality officers, and patient advocacy organizations learn together in working sessions [ 15 ]. The Centre aims to improve the lives of people in vulnerable situations by participatory action research.…”

Section: Methodsmentioning

confidence: 99%

“…During the process, we developed and adjusted the framework to the context of citizen science. Finally, the first author also wrote her thesis on this topic [ 15 ].…”

Section: Methodsmentioning

confidence: 99%

“…Silencing may occur because of the hierarchy of knowledge, where scientific knowledge is perceived to stand above lay knowledge and where researchers keep positions of power. Moreover, academics work according to system guidelines or need to meet tight deadlines thereby often ignoring the capacities and needs of citizen co-researchers to participate [ 14 , 15 ]. Silencing leads to “epistemic injustice,” a concept defined by Miranda Fricker [ 16 , 17 ].…”

Section: Introductionmentioning

confidence: 99%

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

Groot

Abma

2022

BMC Med Ethics

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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.

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Section: Methodsmentioning

confidence: 99%

“…During the process, we developed and adjusted the framework to the context of citizen science. Finally, the first author also wrote her thesis on this topic [ 15 ].…”

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

Groot

Abma

2022

BMC Med Ethics

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“…Moreover, PAR researchers work on issues in the same sociopolitical environments that (re)produced those issues in the first place. Hence, co-researchers often face complex ethical questions and encounter obstacles during the participatory research process (Groot-Sluijsmans, 2021;Mikesell et al, 2013). Some of these "everyday ethical issues" (Walker, 2007) concern power-related complexities (Banks and Brydon-Miller, 2019).…”

Section: Introductionmentioning

confidence: 99%

Participatory action research and intersectionality: a critical dialogical reflection of a study with older adults

Muntinga,

Bendien,

Abma

et al. 2023

QAOA

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Purpose Researchers who work in partnership with older adults in participatory studies often experience various advantages, but also complex ethical questions or even encounter obstacles during the research process. This paper aims to provide insights into the value of an intersectional lens in participatory research to understand how power plays out within a mixed research team of academic and community co-researchers. Design/methodology/approach Four academic researchers reflected in a case-study approach in a dialogical way on two critical case examples with the most learning potential by written dialogical and via face-to-face meetings in duos or trios. This study used an intersectionality-informed analysis. Findings This study shows that the intersectional lens helped the authors to understand the interactions of key players in the study and their different social locations. Intersections of age, gender, ethnicity/class and professional status stood out as categories in conflict. In hindsight, forms of privilege and oppression became more apparent. The authors also understood that they reproduced traditional power dynamics within the group of co-researchers and between academic and community co-researchers that did not match their mission for horizontal relations. This study showed that academics, although they wanted to work toward social inclusion and equality, were bystanders and people who reproduced power relations at several crucial moments. This was disempowering for certain older individuals and social groups and marginalized their voices and interests. Originality/value Till now, not many scholars wrote in-depth about race- and age-related tensions in partnerships in participatory action research or related approaches, especially not about tensions in research with older people.

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