Figure 1
Potential outputs of citizen science projects. Data = information recorded in any format or medium. Arrows show that outputs can generate or lead to other outputs.
Table 1
Select types* and examples of biomedical citizen science projects.
| TYPE | EXAMPLE | REFERENCES |
|---|---|---|
| Games: online puzzles that crowdsource solutions to scientific questions through game play | FoldIt; Eterna | Cooper et al. 2010; Lee et al. 2014 |
| Platforms: online platforms for crowdsourcing data collection and interpretation and/or facilitating scientific collaboration | openSNP; Just One Giant Lab (JOGL) | Greshake et al. 2014; JOGL 2022 |
| Community biology: research, exploration, and technology development conducted in non-traditional, community-based settings (e.g., community laboratories) | Open Insulin Project | Gallegos et al. 2018 |
| Biohacking: research, exploration, and technology development conducted in private settings (e.g., home laboratories) | Home genetic engineering | Pearlman 2019 |
| Patient-driven research: research, exploration, and technology development designed, conducted, and/or led by patients, including self-research | DIYAPS OPEN project; PatientsLikeMe lithium self-research | O’Donnell et al. 2019; Wicks et al. 2011 |
| Health hacking: intensive tracking of personal health measurements to monitor or improve health or wellness | Quantified Self “blood tester” study | Grant, Wolf, and Nebeker 2019 |
[i] * Types are neither exhaustive nor mutually exclusive and are provided with the caveats that terminology and definitions in the biomedical citizen science domain are not settled (Trejo et al. 2021) and multiple typologies to describe biomedical citizen science activities have been described (Guerrini and Contreras 2020).
Table 2
The 4Rs: Ethical considerations for assessing ownership practices in citizen science.
| CONSIDERATION | KEY QUESTION | ANALYTICAL FOCUS | PRIMARY PRINCIPLE |
|---|---|---|---|
| Reciprocal treatment | Does the practice meet minimum criteria for a fair exchange for citizen scientists given their individual inputs? | Individual inputs | Justice |
| Relative treatment | Is the practice too generous to some citizen scientists from the perspective of the project’s other citizen scientists given meaningful differences in their individual inputs? | Comparative inputs | Justice |
| Risk-benefit assessment | Are the anticipated risks and benefits of the practice acceptable? | Consequences | Beneficence |
| Reasonable expectations | Is the practice aligned with the reasonable expectations of citizen scientists generated by the project? | Project features and activities | Respect for persons |