How Biomedical Citizen Scientists Define What They Do: It’s All in the Name

Figures & data

Table 1. Characteristics of interviewees (N = 35).

Characteristic	Number interviewed (%)
Gender
Male	26 (74%)
Female	8 (23%)
Gender non-conforming	1 (3%)
Age
18–39	19 (54%)
40–69	16 (46%)
Region^1
U.S. Northeast	7 (20%)
U.S. South	10 (29%)
U.S. West	16 (46%)
International	2 (6%)
Highest level education
High school diploma/GED	4 (11%)
College graduate	7 (20%)
Graduate/professional degree	24 (69%)

Percentages may not add up to 100% due to rounding.

¹ As defined by U.S. Census Region

Table 2. Terms most frequently identified by interviewees.

Term	Interviewees endorsing term, n (%)	Interviewees avoiding term, n (%)	Example of term used in context
Citizen scientist	15 (43)	7 (20)	“Citizen science as a term, it's an interestingly broad umbrella, in that it often refers to stuff that takes the form of sort of crowdsourcing . . . . When it comes to working with personal information and human subjects research I think it really has an interesting shift in that the people being studied want to be involved in how that study is occurring, what is going to happen in that study. I see that as within human subjects research, citizen science becomes this much more engaged entity.” (008)
Biohacker	8 (23)	6 (17)	“The thing is most biohackers aren't trying to collect data. They're trying to build things.” (001)
Community scientist	7 (20)	0 (0)	“And when we say community science, we have our community scientists who are participating intellectually in the scientific process.” (002)

Auerbach, J., E. L. Barthelmess, D. Cavalier, C. B. Cooper, H. Fenyk, M. Haklay, J. M. Hulbert, C. C. M. Kyba, L. R. Larson, E. Lewandowski, et al. 2019. The problem with delineating narrow criteria for citizen science. Proceedings of the National Academy of Sciences 116 (31):15336–7. doi: 10.1073/pnas.1909278116.

 PubMed Web of Science ®Google Scholar