Ethical aspects of citizen science

Learning objectives

  • Comprehend the role of citizen science in identifying and addressing scientific problems and societal challenges.
  • Recognize the right of citizen scientists to be acknowledged by academic scientists and society.
  • Understand the novel ethical challenges posed by citizen science in health and life sciences.

Introduction

Citizen and participatory science form a critical component of the broader open science framework, which seeks to make the scientific process more transparent and collaborative. UNESCO recognizes the value of involving citizens in scientific research, not only to advance scientific knowledge but also to enhance public engagement with science (UNESCO, 2021).

The history of citizen science in the life and natural sciences is long and varied, dating back to at least the 17th century when amateurs assisted in collecting natural history observations (Miller-Rushing et al., 2012). This early participation laid the foundation for collaborative data collection efforts, like observing animals, plants, and weather patterns. The advent of digital technologies in the late 20th century revolutionized this field, with the internet and mobile apps facilitating global collaboration among citizen scientists. Platforms such as eBird and iNaturalist gained popularity for documenting bird sightings and biodiversity.

However, the extent of citizen scientist involvement varies across scientific disciplines. While prevalent in fields like biology and astronomy, health and biomedical research traditionally have had a different dynamic with nonprofessionals, largely due to protective regulations and oversight (Wiggins & Wibanks, 2019). Yet, this is changing with the democratization of the field and a shift toward patient-centric practices, further supported by the development of accessible digital technologies.

Today, citizen scientists are integral to many life sciences and biomedical projects, contributing significantly to open science objectives like data collection, science literacy, and the dissemination and implementation of research findings. Nonetheless, this involvement presents challenges, such as reconciling the activism of citizen science with the discovery-oriented and objective nature of academic research (Rasmussen & Cooper, 2019). Issues of potential conflicts of interest may arise when citizen scientists are motivated by personal or group interests. Additionally, the increasing participation of citizen scientists in biomedical research raises questions about how established norms of biomedical research ethics apply in this evolving context. Addressing these challenges requires transparency about research goals, openness regarding the roles and interests of all scientists, and ethical handling of open data. The field is rapidly evolving, and many ethical considerations are still being developed and resolved.

References

  1. Miller-Rushing, A., Primack, R., & Bonney, R. (2012). The history of public participation in ecological research. Frontiers in Ecology and the Environment, 10(6), 285-290. https://doi.org/10.1890/110278
  2. Rasmussen, L. M., & Cooper, C. (2019). Citizen science ethics. Citizen Science: Theory and Practice, 4(1). https://doi.org/10.5334/cstp.235
  3. UNESCO (2021). Recommendation on Open Science. https://doi.org/10.54677/MNMH8546 
  4. Wiggins, A., & Wilbanks, J. (2019). The Rise of Citizen Science in Health and Biomedical Research. The American Journal of Bioethics, 19(8), 3–14. https://doi.org/10.1080/15265161.2019.1619859

The term "citizen science" encompasses a wide range of projects that engage laypeople in knowledge production, including as data donors (e.g., American Gut Project), micro-funders, self-experimenters (biohackers or “Do-It-Yourself” biologists), and more. The field's diversity makes categorizing these projects challenging, but Fiske et al. (2019) propose a taxonomy based on the type of participant input:

  • Crowdfunding: Participants fund research projects, typically organized by established scientists within institutions. Examples include American Gut Project and crowdfunding platforms like Experiment.
  • Data or Specimen Collection: Self-selected participants contribute samples or data to large-scale initiatives, often shared publicly. Examples are Personal Genome and Genomera.
  • Social Network and Sharing Platforms: Communities share experiences, symptoms, and treatment effects, sometimes connected to data initiatives or research trials. Platforms include PatientsLikeMe and Curetogether. 
  • Gaming: Complex analytic tasks are framed as games for online players to solve, like Eyewire and FoldIt. 
  • Biohacking: Independent collaborations between amateur and off-duty scientists, often embodying open science principles. This includes various DIY biology groups.

Citizen science offers valuable opportunities for all stakeholders involved; however, it also raises new issues regarding research ethics and integrity. Questions about research subjects' autonomy, rights, and interests play a crucial role in traditional research involving human subjects. There is a debate about whether the framework of traditional research ethics can be transferred into the context of citizen science. This new context raises additional ethical issues, leading some authors to discuss the “ethics gap” between traditional research and citizen science. It is not clear, for example, how to evaluate the social and scientific value of different citizen science projects, particularly in terms of scientific validity, especially for projects that are organized bottom-up. Additionally, issues of data quality and ownership have been raised in the context of citizen science, as citizen scientists are often not specifically trained in research ethics and methodologies. The quality of data collected by citizen scientists can be ensured through various methods. Researchers can provide appropriate training to citizen scientists on data collection techniques and emphasize the importance of maintaining good research records. It is also crucial to ensure that the technological solutions chosen for citizen science projects are comprehensible and user-friendly, which can help minimize errors or misunderstandings during data collection and improve the overall quality of the collected data. Moreover, facilitating discussions between professional researchers and citizen scientists on questions of data ownership and future data accessibility is important to establish clear agreements on how the data will be used, shared, and accessed.

Citizen scientists should also be provided with information regarding research integrity to ensure ethical conduct. This includes informing them about nature of potential financial and non-financial conflicts of interest, such as relationships with organizations sponsoring research or personal interests (Resnik, 2019). Openly discussing the expectations and motivations of citizen scientists within the research team can help foster transparency and compliance with research ethics principles.

Some authors have expressed concerns regarding the potential exploitation and instrumentalization of citizen scientists, where their unpaid work is utilized without proper acknowledgment of their contributions (Resnik, 2019). In the context of biomedical research, an additional concern is how to ensure a favorable benefit-risk ratio for participants, a traditional requirement in biomedical ethics. Some authors, such as Fiske et al. (2019), have expressed worries that desperate patients might self-organize studies with uncertain or significant risks. In many cases, it is not clear how to ensure that participants have been informed about the risks involved, clinical validity, actionability, and other relevant aspects of the study crucial for valid informed consent. Most importantly, while independent ethics review is mandatory in conventional research, citizen science studies often have the opportunity to bypass it.

Finally, issues arise regarding the recognition of the contributions of citizen scientists. In some cases, citizen scientists may qualify for co-authorship if they have made substantial intellectual contributions to the research, including contributions to study design, data analysis, manuscript writing, and agreement to be accountable for all aspects of the research (ICMJE). While traditional academic authorship criteria may not always directly apply to citizen scientists, there are various other ways to appropriately recognize their involvement. Citizen scientists who have contributed to the research but whose contributions do not justify authorship may be acknowledged as contributors, with their roles and specific tasks described in a contributorship statement or acknowledgements. Open and transparent communication with citizen scientists throughout the research process, involving them in discussions about authorship and recognition, is crucial for building trust and ensuring that everyone involved feels appropriately acknowledged for their contributions. 

ROSiE General Guidelines on Responsible Open Science emphasize the responsibilities of different stakeholders in promoting and supporting citizen science:

6.3. Citizen science offers a potential for socially relevant research and innovation, however, the involvement of citizen scientists without proper support can potentially be an ethics and integrity challenge. Policymakers, Research Funding Organisations, Research Performing Organisations, and researchers are responsible for promoting and supporting citizen science. This is done specifically by ensuring support throughout the research lifecycle, through the provision of adequate funding, training, flexible grant structures that accommodate extended timeline research, and encouraging collaborations and building synergies between researchers and other stakeholders. 
6.4. Researchers working with citizen scientists should ensure transparency and open communication to diminish unavoidable power imbalance. 
6.5. Policymakers in collaboration with the scientific community should develop targeted strategies on how to involve diverse societal actors in citizen science and other public engagement activities.
6.6. The research community should ensure that existing knowledge about citizen science approaches is shared so that researchers and citizen scientists learn from each other.

Many of the issues mentioned above currently do not have accepted solutions, and the field is in a phase of rapid development. As Wiggins and Wibanks observe, “Fully harnessing the power of the public in health and biomedical research will require developing a different model of ethical oversight that recognizes the autonomy of participants as a given, continues to ensure that they are well informed on an ongoing basis as the research evolves, and also addresses the problematic assumptions baked into an ethics framework that assumes docile subjects instead of engaged coresearchers” (Wiggins & Wibanks, 2019).

To provide a framework for conducting citizen science projects the European Citizen Science Association (ECSA) has developed the 10 principles of citizen science. Before moving to the next step, please, read: ECSA (European Citizen Science Association). (2015). Ten Principles of Citizen Science 

References

  1. Fiske, A., Del Savio, L., Prainsack, B., & Buyx, A. (2019). Conceptual and Ethical Considerations for Citizen Science in Biomedicine. In N. B. Heyen, S. Dickel, & A. Brüninghaus (Eds.), Personal Health Science: Persönliches Gesundheitswissen zwischen Selbstsorge und Bürgerforschung (pp. 195–217). Springer Fachmedien. https://doi.org/10.1007/978-3-658-16428-7_10
  2. ICMJE. Defining the role of authors and contributors 
  3. Resnik, D.B. (2019). Citizen scientists as human subjects: Ethical issues. Citizen Science: Theory and Practice, 4(1). https://doi.org/10.5334/cstp.150
  4. The Embassy of Good Science: “Authorship criteria”
  5. Wiggins, A., & Wilbanks, J. (2019). The Rise of Citizen Science in Health and Biomedical Research. The American Journal of Bioethics, 19(8), 3–14. https://doi.org/10.1080/15265161.2019.1619859
  1. Balázs, B., Mooney, P., Nováková, E., Bastin, L., Jokar Arsanjani, J. (2021). Data Quality in Citizen Science. In: The Science of Citizen Science. Springer https://doi.org/10.1007/978-3-030-58278-4_8 
  2. Frigerio, D., Richter, A., Per, E., Pruse, B., & Vohland, K. (2021). Citizen science in the natural sciences. In: The Science of Citizen Science. Springer. https://doi.org/10.1007/978-3-030-58278-4_5