References
- 1Armendariz, A, D’haeseleer, P, Gillum, D, Grushkin, D, Harness, E, Kuiken, T and Molloy, J. 2020. Community biology biosafety handbook. Beta version 1.0. Available at
https://docs.google.com/document/d/1Qkc2uCAcLX45b0GjSGZohweelJ-vDOhX5MDSf6F4MEI/edit# (Last accessed 26 August 2022). - 2Asingizwe, D, Marijn Poortvliet, P, Koenraadt, CJM, van Vliet, AJH, Ingabire, CM, Mutesa, L and Leeuwis, C. 2020. Why (not) participate in citizen science? Motivational factors and barriers to participate in a citizen science program for malaria control in Rwanda. PLoS One, 15(8):
e0237396 . DOI: 10.1371/journal.pone.0237396 - 3Baltimore Under Ground Science Space. n.d. Checking ourselves before wrecking ourselves: Co-evolving innovation and safety in the DIYBio community. Available at
https://bugssonline.org/community/diybio-biosafety/ (Last accessed 26 August 2022). - 4Borda, A, Gray, K and Fu, Y. 2020. Research data management in health and biomedical citizen science: Practices and prospects. JAMIA Open, 3(1): 113–125. DOI: 10.1093/jamiaopen/ooz052
- 5Botkin, JR, Mancher, M, Busta, ER and Downey, AS. 2018. Returning individual research results to participants: Guidance for a new research paradigm. Washington, DC: National Academies Press. DOI: 10.17226/25094
- 6Bowser, A, Cooper, C, de Sherbinin, A, Wiggins, A, Brenton, P, Chuang, T-R, Faustman, E, Haklay, M and Meloche, M. 2020. Still in need of norms: The state of the data in citizen science. Citizen Science: Theory and Practice, 5(1): 18. DOI: 10.5334/cstp.303
- 7Cohen, N and Arieli, T. 2011. Field research in conflict environments: Methodological challenges and snowball sampling. Journal of Peace Research, 48(4): 423–435. DOI: 10.1177/0022343311405698
- 8Corden, A and Sainsbury, R. 2006a. Using verbatim quotations in reporting qualitative social research: Researchers’ views. Available at
https://www.york.ac.uk/inst/spru/pubs/pdf/verbquotresearch . - 9Corden, A and Sainsbury, R. 2006b. Exploring ‘quality’: Research participants’ perspectives on verbatim quotations. International Journal of Social Research Methodology, 9(2): 97–110. DOI: 10.1080/13645570600595264
- 10de Lange, O, Dunn, K and Peek, N. 2022. “Short on time and big on ideas”: Perspectives from lab members on DIYBio work in community biolabs. Available at arXiv:2205.00079. DOI: 10.48550/arXiv.2205.00079
- 11Den Broeder, L, Lemmens, L, Uysal, S, Kauw, K, Weekenborg, J, Schönenberger, M, Klooster-Kwakkelstein, S, Schoenmakers, M, Scharwächter, W, Van de Weerd, A, El Baouchi, S, Jantine Schuit, A and Wagemakers, A. 2017. Public health citizen science; Perceived impacts on citizen scientists: A case study in a low-income neighbourhood in the Netherlands. Citizen Science: Theory and Practice, 2(1): 7. DOI: 10.5334/cstp.89
- 12Ellard-Gray, A, Jeffrey, NK, Choubak, M and Crann, SE. 2015. Finding the hidden participant: Solutions for recruiting hidden, hard-to-reach, and vulnerable populations. International Journal of Qualitative Methods, 14(5): 1–10. DOI: 10.1177/1609406915621420
- 13European Citizen Science Association (ECSA). 2015. Ten principles of citizen science. DOI: 10.17605/OSF.IO/XPR2N
- 14European Citizen Science Association (ECSA). 2020. ECSA’s characteristics of citizen science. Version 1. Available at
https://ecsa.citizen-science.net/wp-content/uploads/2020/05/ecsa_characteristics_of_citizen_science_-_v1_final.pdf . (Last accessed 26 August 2022). - 15Eveleigh, A, Jennett, C, Blandford, A, Brohan, P and Cox, AL. 2014. Designing for dabblers and deterring drop-outs in citizen science. In: CHI’14: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, Toronto, ON, pp. 2985–2994. DOI: 10.1145/2556288.2557262
- 16Everett, G and Geoghegan, H. 2016. Initiating and continuing participation in citizen science for natural history. BMC Ecology, 16(1 Suppl): S13. DOI: 10.1186/s12898-016-0062-3
- 17Fletcher, FE, Rice, WS, Ingram, LA and Fisher, CB. 2019. Ethical challenges and lessons learned from qualitative research with low-income African American women living with HIV in the South. Journal of Health Care for the Poor and Underserved, 30(4 Suppl), pp. 116–129. DOI: 10.1353/hpu.2019.0122
- 18Follett, R and Strezov, V. 2015. An analysis of citizen science based research: Usage and publication patterns. PLoS One, 10(11):
e0143687 . DOI: 10.1371/journal.pone.0143687 - 19Gelinas, L, Largent, EA, Cohen, IG, Komensky, S, Bierer, BE and Fernandez Lynch, H. 2018. A framework for ethical payment to research participants. New England Journal of Medicine, 378(8): 766–771. DOI: 10.1056/NEJMsb1710591
- 20Guerrini, CJ and Contreras, JL. 2020. Credit for and control of research outputs in genomic citizen science. Annual Review of Genomics and Human Genetics, 21: 465–489. DOI: 10.1146/annurev-genom-083117-021812
- 21Guerrini, CJ, Lewellyn, M, Majumder, MA, Trejo, M, Canfield, I and McGuire, AL. 2019. Donors, authors, and owners: How is genomic citizen science addressing interests in research outputs? BMC Medical Ethics, 20: 84. DOI: 10.1186/s12910-019-0419-1
- 22Guerrini, CJ, Spencer, GE and Zettler, PJ. 2019. DIY CRISPR. North Carolina Law Review, 97(5): 1399–1462.
- 23Guerrini, CJ, Trejo, M, Canfield, I and McGuire, AL. 2022. Core values of genomic citizen science: Results from a qualitative interview study. BioSocieties, 17: 203–228. DOI: 10.1057/s41292-020-00208-2
- 24Guest, G, Bunce, A and Johnson, L. 2006. How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1): 59–82. DOI: 10.1177/1525822X05279903
- 25Guest, G, Namey, E and Chen, M. 2020. A simple method to assess and report thematic saturation in qualitative research. PLoS One, 15(5):
e0232076 . DOI: 10.1371/journal.pone.0232076 - 26Guillemin, M and Gillam, L. 2004. Ethics, reflexivity, and “ethically important moments” in research. Qualitative Inquiry, 10(2): 261–280. DOI: 10.1177/1077800403262360
- 27Iacovides, I, Jennett, C, Cornish-Trestrail, C and Cox, AL. 2013.
Do games attract or sustain engagement in citizen science? A study of volunteer motivations . In: CHI ‘13 Extended Abstracts on Human Factors in Computing Systems, Association for Computing Machinery, New York, NY, pp. 1101–1106. DOI: 10.1145/2468356.2468553 - 28Jones, MG, Childers, G, Andre, T, Corin, EN and Hite, R. 2018. Citizen scientists and non-citizen scientist hobbyists: Motivation, benefits, and influences. International Journal of Science Education, Part B, 8(4): 287–306. DOI: 10.1080/21548455.2018.1475780
- 29Kelly, R, Fleming, A, Pecl, GT, Richter, A and Bonn, A. 2019. Social license through citizen science: A tool for marine conservation. Ecology and Society, 24(1): 16. DOI: 10.5751/ES-10704-240116
- 30Kuiken, T. 2020.
Biology without borders: Need for collective governance? In: Trump, BD, Cummings, CL, Kuzma, J and Linkov, I (eds.), Synthetic Biology 2020: Frontiers in Risk Analysis and Governance, 269–296. Cham, CH: Springer Nature Switzerland AG. DOI: 10.1007/978-3-030-27264-7_12 - 31McCurdy, SA and Ross, MW. 2018. Qualitative data are not just quantitative data with text but data with context: On the dangers of sharing some qualitative data: Comment on DuBois et al. (2018). Qualitative Psychology, 5(3): 409–411. DOI: 10.1037/qup0000088
- 32McGowan, ML, Choudhury, S, Juengst, ET, Lambrix, M, Settersten, RA,
Jr and Fishman, JR. 2017. “Let’s pull these technologies out of the ivory tower”: The politics, ethos, and ironies of participant-driven genomic research. BioSocieties, 12(4): 494–519. DOI: 10.1057/s41292-017-0043-6 - 33Merenlender, AM, Crall, AW, Drill, S, Prysby, M and Ballard, H. 2016. Evaluating environmental education, citizen science, and stewardship through naturalist programs. Conservation Biology, 30(6): 1255–1265. DOI: 10.1111/cobi.12737
- 34Meyer, M. 2021.
Biohacking . In: O’Neil, M, Pentzold, C and Toupin, S (eds.), The Handbook of Peer Production, 211–224. Malden, MA: Wiley-Blackwell. DOI: 10.1002/9781119537151.ch16 - 35Patton, MQ. 2015. Qualitative Research and Evaluation Methods. Thousand Oaks, CA: SAGE Publications, Inc.
- 36Pearlman, A and Kong, DS. 2021. Towards collectively-defined ethics standards for independent researchers and community biology groups. Available at
https://lexikon1.medium.com/towards-collectively-defined-ethics-standards-for-independent-researchers-and-community-biology-d041e6a81f4d . (Last accessed 21 August 2022). - 37Plummer, D and Simpson, JE. 2014.
Using in-depth interviews to research taboo issues, stigmatized conditions and marginalized populations: Lessons learned from the Caribbean Masculinities Project . In: SAGE Research Methods Cases Part I. SAGE Publications, Ltd. DOI: 10.4135/978144627305014534171 - 38Raddick, MJ, Bracey, G, Gay, PL, Lintott, CJ, Murray, P, Schawinski, K, Szalay, AS and Vandenberg, J. 2010. Galaxy Zoo: Exploring the motivations of citizen science volunteers. Astronomy Education Review, 9(1): 010103–1. DOI: 10.3847/AER2009036
- 39Rambonnet, L, Vink, SC, Land-Zandstra, AM and Bosker, T. 2019. Making citizen science count: Best practices and challenges of citizen science projects on plastics in aquatic environments. Marine Pollution Bulletin, 145: 271–277. DOI: 10.1016/j.marpolbul.2019.05.056
- 40Robinson, OC. 2014. Sampling in interview-based qualitative research: A theoretical and practical guide. Qualitative Research in Psychology, 11(1): 25–41. DOI: 10.1080/14780887.2013.801543
- 41Ross-Hellauer, T, Tennant, JP, Banelytė, V, Gorogh, E, Luzi, D, Kraker, P, Pisacane, L, Ruggieri, R, Sifacaki, E and Vignoli, M. 2020. Ten simple rules for innovative dissemination of research. PLoS Computational Biology, 16(4):
e1007704 . DOI: 10.1371/journal.pcbi.1007704 - 42Rotman, D, Preece, J, Hammock, J, Procita, K, Hansen, D, Parr, C, Lewis, D and Jacobs, D. 2012. Dynamic changes in motivation in collaborative citizen-science projects. In: CSCW ‘12: Proceedings of the ACM 2012 Conference on Computer Supported Cooperative Work, Seattle, 217–226. WA. DOI: 10.1145/2145204.2145238
- 43Seidman, I. 2019. Interviewing as Qualitative Research: A Guide for Researchers in Education and the Social Sciences. New York, NY: Teachers College Press.
- 44Sivell, S, Prout, H, Hopewell-Kelly, N, Baillie, J, Byrne, A, Edwards, M, Harrop, E, Noble, S, Sampson, C and Nelson, A. 2019. Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: A consensus paper. BMJ Supportive and Palliative Care, 9: e14. DOI: 10.1136/bmjspcare-2015-000892
- 45Tolich, M and Tumilty, E. 2020. Practicing ethics and ethics praxis. The Qualitative Report, 25(13): 16–30. DOI: 10.46743/2160-3715/2020.4753
- 46Trejo, M, Canfield, I, Bash Brooks, W, Pearlman, A and Guerrini, CJ. 2021b. “A cohort of pirate ships”: Biomedical citizen scientists’ attitudes toward ethical oversight. Citizen Science: Theory and Practice, 6(1): 15. DOI: 10.5334/cstp.360
- 47Trejo, M, Canfield, I, Robinson, JO and Guerrini, CJ. 2021a. How biomedical citizen scientists define what they do: It’s all in the name. AJOB Empirical Bioethics, 12(1): 63–70. DOI: 10.1080/23294515.2020.1825139
- 48Wexler, A, Choi, R, Pearlman, A and Rasmussen, L. 2022. Navigating biosafety concerns within COVID-19 do-it-yourself (DIY) science: An ethnographic and interview study. Available at
https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4191880 . DOI: 10.2139/ssrn.4191880 - 49Wiggins, A and Wilbanks, J. 2019. The rise of citizen science in health and biomedical research. The American Journal of Bioethics, 19(8): 3–14. DOI: 10.1080/15265161.2019.1619859
- 50Yow, VR. 2015. Recording Oral History: A Guide for the Humanities and Social Sciences. Lanham, MD: Rowman & Littlefield.
