Every participant is a PI. Citizen science and participatory governance in population studies

Buyx, Alena; Savio, Lorenzo Del; Prainsack, Barbara; Völzke, Henry

doi:10.1093/ije/dyw204

Cited by 39 publications

(35 citation statements)

References 42 publications

(38 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…biomedical participant-led research, and Buyx et al (5) note the need for a solidarity-based practice of CS to fully exploit its potential, making "every participant a PI. "…”

mentioning

confidence: 99%

Toward an international definition of citizen science

Heigl

Kieslinger

Paul

et al. 2019

Proc. Natl. Acad. Sci. U.S.A.

171

114

View full text Add to dashboard Cite

“…biomedical participant-led research, and Buyx et al (5) note the need for a solidarity-based practice of CS to fully exploit its potential, making "every participant a PI. "…”

mentioning

confidence: 99%

Toward an international definition of citizen science

Heigl

Kieslinger

Paul

et al. 2019

Proc. Natl. Acad. Sci. U.S.A.

171

114

View full text Add to dashboard Cite

“…'ticking the box'), which will do little to reduce the agency gap between stakeholders (Winickoff, 2007). A number of governance structures have been proposed to facilitate this, such as the wiki-governance model, the Every Participant is a PI (EPPI) model and the adaptive governance model (Hunter and Laurie, 2009;O'Doherty et al, 2011;Dove et al, 2012;Buyx et al, 2017). In any case, as complex tissue biobanking raises ethical challenges and patients have legitimate interests distinct from those of healthy participants, a 'social approach' in biobanking that focuses on transparency, openness, solidarity and reciprocity between stakeholders can be valuable (Vos et al, 2017).…”

Section: Approaches To More Active Forms Of Participant Involvement Imentioning

confidence: 99%

Responsible use of organoids in precision medicine: the need for active participant involvement

et al. 2020

View full text Add to dashboard Cite

Organoids are three-dimensional multicellular structures grown in vitro from stem cells and which recapitulate some organ function. They are derivatives of living tissue that can be stored in biobanks for a multitude of research purposes. Biobank research on organoids derived from patients is highly promising for precision medicine, which aims to target treatment to individual patients. The dominant approach for protecting the interests of biobank participants emphasizes broad consent in combination with privacy protection and ex ante (predictive) ethics review. In this paradigm, participants are positioned as passive donors; however, organoid biobanking for precision medicine purposes raises challenges that we believe cannot be adequately addressed without more ongoing involvement of patient-participants. In this Spotlight, we argue why a shift from passive donation towards more active involvement is particularly crucial for biobank research on organoids aimed at precision medicine, and suggest some approaches appropriate to this context.

show abstract

“…That is why collective governance models are strongly advocated and proposed as a way to overcome the pitfalls of individual solutions and the oneto-one model of informed consent. An example of collective governance is the EPPI model (Buyx et al 2017). Conceived for the epidemiology field (and not yet implemented), EPPI citizens are envisioned as being part of the governing bodies of research, and they collectively exercise control over the data, as well as propose and deliberate on research questions and concerns.…”

Section: Collective Governance: a Framework For New Solutionsmentioning

confidence: 99%

The Promise of Participation and Decision-Making Power in Citizen Science

Eleta

Clavell

Righi

et al. 2018

Citizen Science: Theory and Practice

View full text Add to dashboard Cite

Citizen science is challenging professional researchers and their organizations to rethink the way they do science and connect with society. In any citizen science project, professional researchers are "making a promise" to the public about the level of participation and power in decision making that they are willing to provide to citizen scientists. Researchers should set expectations explicitly to ensure informed participation, trust, and motivation. Also, the design of tools for informed consent, information sharing, recognition, and privacy has to be adapted to the new power relations and distributed knowledge production. Based on fieldwork experiences and literature review about environmental and biomedical citizen science, this article examines the challenges and proposes solutions for: 1) setting expectations for informed participation; 2) addressing privacy concerns and adapting informed consent to evolving interests and networked environments; and 3) promoting citizen governance of research data. Citizen science has the potential to both increase scientific literacy and counteract mistrust and skepticism about scientific evidence of global problems (such as climate change) that need to be addressed. However, there are still many challenges to fulfilling the promise of citizen science-for example, empowering people and gaining trust. A few inspiring initiatives help us reflect on a facilitation model for engagement and informed participation; privacy by design; and new governance models for research data provided by citizen scientists.

show abstract

Every participant is a PI. Citizen science and participatory governance in population studies

Cited by 39 publications

References 42 publications

Toward an international definition of citizen science

Toward an international definition of citizen science

Responsible use of organoids in precision medicine: the need for active participant involvement

The Promise of Participation and Decision-Making Power in Citizen Science

Contact Info

Product

Resources

About