Mind the Gap: The Ethics Void Created by the Rise of Citizen Science in Health and Biomedical Research

Patrick-Lake, Bray; Goldsack, Jennifer C.

doi:10.1080/15265161.2019.1639389

Cited by 8 publications

(7 citation statements)

References 3 publications

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“…Although DTP genomics research by definition includes institutional oversight and is situated within a conventional research ethics context, one would be mistaken to believe that traditional legal and regulatory protections are adequate. In fact, human subjects protections have not kept pace with participatory research, generating what some have called ‘ethics gaps’ 4 16. 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.…”

Section: Ethical Considerationsmentioning

confidence: 99%

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

Zhang

2023

J Med Ethics

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Count Me In (CMI) was launched in 2015 as a patient-driven research initiative aimed at accelerating the study of cancer genomics through direct participant engagement, electronic consent and open-access data sharing. It is an example of a large-scale direct-to-patient (DTP) research project which has since enrolled thousands of individuals. Within the broad scope of ‘citizen science’, DTP genomics research is defined here as a specific form of ‘top-down’ research endeavour developed and overseen by institutions within the traditional human subjects research context; in novel ways, it engages and recruits patients with defined diseases, consents them for medical information and biospecimens sharing, and stores and disseminates genomic information. Importantly, these projects simultaneously aim to empower participants in the research process while increasing sample size, particularly in rare disease states. Using CMI as a case study, this paper discusses how DTP genomics research raises new questions in the context of traditional human subjects research ethics, including issues surrounding participant selection, remote consent, privacy and return of results. It aims to demonstrate how current research ethics frameworks may be insufficient in this context, and that institutions, institutional review boards and investigators should be aware of these gaps and their role in ensuring the conduct of ethical, novel forms of research together with participants. Ultimately, a broader question is raised of whether the rhetoric of participatory genomics research advocates for an ethic of personal and social duty for contributing to the advancement of generalisable knowledge about health and disease.

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Section: Ethical Considerationsmentioning

confidence: 99%

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

Zhang

2023

J Med Ethics

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“…However, in some contexts CS participants are not regarded as research subjects, but rather as "research assistants" and the Common Rule does not mandate IRBs to consider risks or benefits to citizens who facilitate research in other ways (Guerrini et al, 2018;Oberle et al, 2019;Rothstein, Wilbanks and Brothers, 2015). Also, another challenge that the authors describe is that private initiatives such as community-driven CS projects fall outside the Common Rule and do not have to go through IRB review (Guerrini et al, 2018;Patrick-Lake and Goldsack, 2019;Wiggins and Wilbanks, 2019).…”

Section: Participant Protection and Privacymentioning

confidence: 99%

“…The current technology provides us with apps and gadgets collecting personal health data, which individuals may choose to donate to projects not subjected to academic regulation and policies. In some cases, participants may not be able to fully understand how and by whom their data are used, because of obscured content of the informed consent (Patrick-Lake and Goldsack, 2019;Rothstein, Wilbanks and Brothers, 2015;Wiggins and Wilbanks, 2019). The collection and aggregation of health data could reveal health issues causing distress to the participant.…”

Section: Participant Protection and Privacymentioning

confidence: 99%

Research Data Management Challenges in Citizen Science Projects and Recommendations for Library Support Services. A Scoping Review and Case Study

Hansen

Gadegaard

Hansen

et al. 2021

CODATA

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Citizen science (CS) projects are part of a new era of data aggregation and harmonisation that facilitates interconnections between different datasets. Increasing the value and reuse of CS data has received growing attention with the appearance of the FAIR principles and systematic research data management (RDM) practises, which are often promoted by university libraries. However, RDM initiatives in CS appear diversified and if CS have special needs in terms of RDM is unclear. Therefore, the aim of this article is firstly to identify RDM challenges for CS projects and secondly, to discuss how university libraries may support any such challenges.A scoping review and a case study of Danish CS projects were performed to identify RDM challenges. 48 articles were selected for data extraction. Four academic project leaders were interviewed about RDM practices in their CS projects.Challenges and recommendations identified in the review and case study are often not specific for CS. However, finding CS data, engaging specific populations, attributing volunteers and handling sensitive data including health data are some of the challenges requiring special attention by CS project managers. Scientific requirements or national practices do not always encompass the nature of CS projects.Based on the identified challenges, it is recommended that university libraries focus their services on 1) identifying legal and ethical issues that the project managers should be aware of in their projects, 2) elaborating these issues in a Terms of Participation that also specifies data handling and sharing to the citizen scientist, and 3) motivating the project manager to good data handling practises. Adhering to the FAIR principles and good RDM practices in CS projects will continuously secure contextualisation and data quality. High data quality increases the value and reuse of the data and, therefore, the empowerment of the citizen scientists.

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“…Ethical issues concerning participatory citizen science studies have received attention only recently [Patrick-Lake and Goldsack, 2019;Rasmussen, 2019;Rasmussen and Cooper, 2019;Wiggins and Wilbanks, 2019]. The debate is evolving, and institutional guidelines and rules have not been agreed upon yet.…”

Section: Co-created Projects In Public Health and Their Ethical Aspectsmentioning

confidence: 99%

Investigating the process of ethical approval in citizen science research: the case of Public Health

Ficorilli¹,

Maccani²,

Balestrini³

et al. 2021

JCOM

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Undertaking citizen science research in Public Health involving human subjects poses significant challenges concerning the traditional process of ethical approval. It requires an extension of the ethics of protection of research subjects in order to include the empowerment of citizens as citizen scientists. This paper investigates these challenges and illustrates the ethical framework and the strategies developed within the CitieS-Health project. It also proposes first recommendations generated from the experiences of five citizen science pilot studies in environmental epidemiology within this project.

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Mind the Gap: The Ethics Void Created by the Rise of Citizen Science in Health and Biomedical Research

Cited by 8 publications

References 3 publications

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

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

Research Data Management Challenges in Citizen Science Projects and Recommendations for Library Support Services. A Scoping Review and Case Study

Investigating the process of ethical approval in citizen science research: the case of Public Health

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