A best-worst scaling experiment to prioritize concern about ethical issues in citizen science reveals heterogeneity on people-level v. data-level issues.

"Citizen science" refers to the participation of lay individuals in scientific studies and other activities having scientific objectives. Citizen science gives rise to unique ethical issues that stem from the potentially multifaceted contributions of citizen scientists to the research process. We sought to explore the ethical issues that are most concerning to citizen scientist practitioners, participants, and scholars to support ethical practices in citizen science. We developed a best-worst scaling experiment using a balanced incomplete block design and fielded it with respondents recruited through the U.S.-based Citizen Science Association. Respondents were shown repeated subsets of 11 ethical issues and identified the most and least concerning issues in each subset. Latent class analysis revealed two respondent classes. The "Power to the People" class was most concerned about power imbalance between project leaders and participants, exploitation of participants, and lack of diverse participation. The "Show Me the Data" class was most concerned about the quality of data generated by citizen science projects and failure of projects to share data and other research outputs.

The Perils of Parity: Should Citizen Science and Traditional Research Follow the Same Ethical and Privacy Principles?

The individual right of access to one's own data is a crucial privacy protection long recognized in U.S. federal privacy laws. Mobile health devices and research software used in citizen science often fall outside the HIPAA Privacy Rule, leaving participants without HIPAA's right of access to one's own data. Absent state laws requiring access, the law of contract, as reflected in end-user agreements and terms of service, governs individuals' ability to find out how much data is being stored and how it might be shared with third parties. Efforts to address this problem by establishing norms of individual access to data from mobile health research unfortunately can run afoul of the FDA's investigational device exemption requirements.

"Hunting Down My Son's Killer": New Roles of Patients in Treatment Discovery and Ethical Uncertainty.

The past few years have witnessed several media-covered cases involving citizens actively engaging in the pursuit of experimental treatments for their medical conditions-or those of their loved ones-in the absence of established standards of therapy. This phenomenon is particularly observable in patients with rare genetic diseases, as the development of effective therapies for these disorders is hindered by the limited profitability and market value of pharmaceutical research. Sociotechnical trends at the cross-section of medicine and society are facilitating the involvement of patients and creating the digital infrastructure necessary to its sustainment. Such participant-led research (PLR) has the potential to promote the autonomy of research participants as drivers of discovery and to open novel non-canonical avenues of scientific research. At the same time, however, the extra-institutional, self-appointed, and, often, oversight-free nature of PLR raises ethical concern. This paper explores the complex ethical entanglement of PLR by critically appraising case studies and discussing the conditions for its moral justification. Furthermore, we propose a path forward to ensure the safe and effective implementation of PLR within the current research ecosystem in a manner that maximizes the benefits for both individual participants and society at large, while minimizing the risks.

Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs?

BACKGROUND: Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger-and also more likely to conflict with those of institution-based researchers and other stakeholders-as participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice. To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives. METHODS: We queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants' access to and control over research outputs. RESULTS: This analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants' access to research outputs, including datasets and published findings, none supported participants' control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs. CONCLUSIONS: There are opportunities for citizen science initiatives to incorporate more features that support participants' access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities.

The Rise of Citizen Science in Health and Biomedical Research.

Citizen science models of public participation in scientific research represent a growing area of opportunity for health and biomedical research, as well as new impetus for more collaborative forms of engagement in large-scale research. However, this also surfaces a variety of ethical issues that both fall outside of and build upon the standard human subjects concerns in bioethics. This article provides background on citizen science, examples of current projects in the field, and discussion of established and emerging ethical issues for citizen science in health and biomedical research.

Finding Common Ground and Advancing Engagement in Citizen Science.

Citizen science, a diverse enterprise involving multiple processes, participants, and projects, challenges conventional approaches to thinking about science and the issues it raises. This commentary explores three key themes identified in the accompanying narratives. (1) Motivated volunteers may serve as novel resources for science, allowing projects to proceed in ways that are cheaper and more accessible than previously considered. (2) Traditional scientific approaches may be insufficient to even identify research questions, much less attempt to address issues. Citizen science may fill that gap. (3) Ethical concepts may have unique applications in this burgeoning field, both due to the emergence of novel ethical issues and to new categories of people, places, and things inherent in the conduct of citizen science. The commentary closes with suggestions for moving forward as citizen science becomes the norm rather than the exception.

Citizen Science Ethics: It's a Community Thing.

Citizen scientists find their conduct to be ethically justified when it accords with the norms and practices of the community with which they identify. These communities will always be challenging to form since they must integrate people with diverse expertise. And occasionally it will be necessary to transcend the perspectives of one's own community by listening to other voices. Those concerned to cultivate ethical cultures for citizen science should take fostering of community as a central task.

The Kaleidoscope of Citizen ScienceCommentary.

The narratives in this issue suggest six themes that merit further exploration: (1) the complexity of citizen science as a concept; (2) the potential to incorporate insights from the literature on team science; (3) the role of power and privilege in citizen science; (4) tensions over standardization, regulation, and quality control; (5) the nature and importance of local knowledge; and (6) the role of funding sources in citizen science initiatives. Taken together, these narratives and themes provide an image of citizen science that is like a kaleidoscope. They portray citizen science as a jumble of different kinds of activities that are in a constant state of flux. One of the most important tasks for the citizen science community going forward is to find ways to harness this energy and innovation while providing appropriate guidelines and standards.

Citizen Science and Gamification.

According to the mainstream conception of research involving human participants, researchers have been trained scientists acting within institutions and have been the individuals doing the studying, while participants, who are nonscientist members of the public, have been the individuals being studied. The relationship between the public and scientists is evolving, however, giving rise to several new concepts, including crowdsourcing and citizen science. In addition, the practice of gamification has been applied to research protocols. The role of gamified, crowdsourced citizen scientist is new in the domain of scientific research and does not fit into the existing taxonomy of researchers and participants. We delineate and explicate this role and show that, while traditional roles are governed by well-established norms and regulations, individuals engaged in gamified, crowdsourced citizen science-gamers-fall through the cracks of research protections and regulations. We consider the issues this raises, including exploitation and the absence of responsibility and accountability. Finally, we offer suggestions for how the current lack of appropriate norms may be rectified.