“Idealists and capitalists”: ownership attitudes and preferences in genomic citizen science

References

• 35 U. S. Code § 101 et seq.
   Google Scholar
• Ahmed, E., and M. Shabani. 2019. “DNA Data Marketplace: An Analysis of the Ethical Concerns Regarding the Participation of the Individuals.” Frontiers in Genetics 10: 1107.
   PubMedGoogle Scholar
• Asay, C. D. 2013. “A Case for the Public Domain.” Ohio State Law Journal 74: 753–806.
   Google Scholar
• Aungst, H., J. R. Fishman, and M. L. McGowan. 2017. “Participatory Genomic Research: Ethical Issues from the Bottom Up to the Top Down.” Annual Review of Genomics and Human Genetics 18: 357–367.
   PubMedGoogle Scholar
• Benkler, Y. 2006. The Wealth of Networks: How Social Production Transforms Markets and Freedom. New Haven, CT: Yale University Press.
   Google Scholar
• Blasimme, A., E. Vayena, and E. Hafen. 2018. “Democratizing Health Research Through Data Cooperatives.” Philosophy and Technology 31: 473–479.
   Google Scholar
• Bonetta, L. 2009. “New Citizens for the Life Sciences.” Cell 138 (6): 1043–1045.
   PubMedGoogle Scholar
• Borda, A., K. Gray, and Y. Fu. 2019. “Research Data Management in Health and Biomedical Citizen Science: Practices and Prospects.” JAMIA Open 3 (1): 113–125.
   PubMedGoogle Scholar
• Braun, V., and V. Clarke. 2006. “Using Thematic Analysis in Psychology.” Qualitative Research in Psychology 3 (2): 77–101.
   Google Scholar
• Buyx, A., L. Del Savio, B. Prainsack, and H. Volzke. 2017. “Every Participant is a PI. Citizen Science and Participatory Governance in Population Studies.” International Journal of Epidemiology 46 (2): 377–384.
   PubMed Web of Science ®Google Scholar
• Ceccaroni, L., A. Bowser, and P. Brenton. 2017. “Civic Education and Citizen Science: Definitions, Categories, Knowledge Representation.” In Analyzing the Role of Citizen Science in Modern Research, edited by L. Ceccaroni and J. Piera, 1–23. Hershey, PA: IGI Global.
   Google Scholar
• Chien, C. 2016a. “Beyond Eureka: What Creators Want (Freedom, Credit, and Audiences) and How Intellectual Property Can Better Give It to Them (By Supporting, Sharing, Licensing, and Attribution).” Michigan Law Review 114: 1081–1107.
   Google Scholar
• Chien, C. V. 2016b. “Opening the Patent System: Diffusionary Levers in Patent Law.” Southern California Law Review 89: 793–862.
   Google Scholar
• Contreras, J. L. 2011. “Bermuda’s Legacy: Policy, Patents, and the Design of the Genome Commons.” Minnesota Journal of Law, Science & Technology 12 (1): 61–125.
   Google Scholar
• Contreras, J. L. 2015. “Patent Pledges.” Arizona State Law Journal 47: 543–608.
   Google Scholar
• Contreras, J. L. 2019. “The False Promise of Health Data Ownership.” New York University Law Review 94: 624–661.
   Google Scholar
• Delfanti, A. 2013. Biohackers: The Politics of Open Science. London: Pluto Press.
   Google Scholar
• ECSA (European Citizen Science Association). 2020a. “ECSA’s Characteristics of Citizen Science.” ECSA, April. Accessed June 18, 2021. https://ecsa.citizen-science.net/wp-content/uploads/2020/05/ecsa_characteristics_of_citizen_science_-_v1_final.pdf.
   Google Scholar
• ECSA (European Citizen Science Association). 2020b. “ECSA’s Characteristics of Citizen Science: Explanation Notes.” ECSA, April. Accessed June 18, 2021. https://ecsa.citizen-science.net/wp-content/uploads/2020/05/ecsa_characteristics_of_citizen_science_explanation_notes_-_v1_final.pdf.
   Google Scholar
• Eitzel, M. V., J. L. Cappadonna, C. Santos-Lang, R. E. Duerr, A. Virapongse, S. E. West, C. C. M. Kyba, et al. 2017. “Citizen Science Terminology Matters: Exploring Key Terms.” Citizen Science: Theory and Practice 2 (1): 1.
   Google Scholar
• Evans, B. J. 2016. “Barbarians at the Gate: Consumer-Driven Health Data Commons and the Transformation of Citizen Science.” American Journal of Law & Medicine 42: 651–685.
   PubMedGoogle Scholar
• Fisher III, W. W. 2010. “The Implications for Law of User Innovation.” Minnesota Law Review 94: 1417–1477.
   Google Scholar
• Guerrini, C. J., and J. L. Contreras. 2020. “Credit for and Control of Research Outputs in Genomic Citizen Science.” Annual Review of Genomics and Human Genetics 21: 465–489.
   PubMedGoogle Scholar
• Guerrini, C. J., M. Lewellyn, M. A. Majumder, M. Trejo, I. Canfield, and A. L. McGuire. 2019. “Donors, Authors, and Owners: How is Genomic Citizen Science Addressing Interests in Research Outputs?” BMC Medical Ethics 20: 84.
   PubMedGoogle Scholar
• Guerrini, C. J., M. Trejo, I. Canfield, and A. L. McGuire. 2020. “Core Values of Genomic Citizen Science: Results from a Qualitative Interview Study.” Biosocieties. https://doi.org/10.1057/s41292-020-00208-2.
   PubMed Web of Science ®Google Scholar
• Haklay, M., D. Dorler, F. Heigl, M. Manzoni, S. Hecker, and K. Vohland. 2021. “What is Citizen Science? The Challenges of Definition.” In The Science of Citizen Science, edited by K. Vohland, A. Land-Zandstra, L. Ceccaroni, L. Lemmens, J. Perello, M. Ponti, R. Samson, and K. Wagenknecht, 13–33. Cham: Springer Nature Switzerland.
   Google Scholar
• Haklay, M., D. Fraisl, B. G. Tzovaras, S. Hecker, M. Gold, G. Hager, L. Ceccaroni, et al. 2021. Contours of Citizen Science: A Vignette Study.” Royal Society Open Science 8: 202108.
   PubMedGoogle Scholar
• Hertzfeld, A. 1982. “Signing party.” Folklore, February. https://www.folklore.org/StoryView.py?project=Macintosh&story=Signing_Party.txt&showcomments=1.
   Google Scholar
• Hess, C., and E. Ostrom. 2007. “Introduction: An Overview of the Knowledge Commons.” In Understanding Knowledge as a Commons: From Theory to Practice, edited by C. Hess and E. Ostrom, 3–26. Cambridge, MA: MIT Press.
   Google Scholar
• Kain, R., S. Kahn, D. Thompson, D. Lewis, D. Barker, C. Bustamante, C. Cabou, et al. 2019. “Database Shares That Transform Research Subjects Into Partners.” Nature Biotechnology 37: 1110–1117.
   PubMedGoogle Scholar
• Kelly, D. B. 2014. “The Right to Include.” Emory Law Journal 63: 857–924.
   Google Scholar
• Leeson, P. T. 2007. “An-arrgh-chy: The Law and Economics of Pirate Organization.” Journal of Political Economy 115 (6): 1049–1094.
   Web of Science ®Google Scholar
• Madison, M. J. 2014. “Commons at the Intersection of Peer Production, Citizen Science, and Big Data: Galaxy Zoo.” In Governing Knowledge Commons, edited by B. M. Frischmann, M. J. Madison, and K. J. Strandburg, 209–254. New York, NY: Oxford University Press.
   Google Scholar
• McGowan, M. L., S. Choudhury, E. T. Juengst, M. Lambrix, R. A. Settersten Jr., and J. R. Fishman. 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.
   Google Scholar
• McGuire, A. L., J. Roberts, S. Aas, and B. J. Evans. 2019. “Who Owns the Data in a Medical Information Commons?” Journal of Law, Medicine and Ethics 47: 62–69.
   PubMedGoogle Scholar
• Merges, R. P. 2004. “A New Dynamism in the Public Domain.” University of Chicago Law Review 71: 183–203.
   Web of Science ®Google Scholar
• Rasmussen, L. M. 2021. “Research Ethics in Citizen Science.” In The Oxford Handbook of Research Ethics, edited by A. S. Iltis and D. MacKay. Oxford: Oxford University Press.
   Google Scholar
• Resnik, D. B., K. C. Elliott, and A. K. Miller. 2015. “A Framework for Addressing Ethical Issues in Citizen Science.” Environmental Science and Policy 54: 475–481.
   Web of Science ®Google Scholar
• Riesch, H., and C. Potter. 2014. “Citizen Science as Seen by Scientists: Methodological, Epistemological and Ethical Dimensions.” Public Understanding of Science 23 (1): 107–120.
   PubMed Web of Science ®Google Scholar
• Scassa, T., and H. Chung. 2015. “Managing Intellectual Property Rights in Citizen Science: A Guide for Researchers and Citizen Scientists.” Woodrow Wilson International Center for Scholars. https://www.wilsoncenter.org/sites/default/files/media/documents/publication/managing_intellectual_property_rights_citizen_science_scassa_chung.pdf.
   Google Scholar
• Shabani, M. 2019. “Blockchain-Based Platforms for Genomic Data Sharing: A De-Centralized Approach in Response to the Governance Problems?” Journal of the American Medical Informatics Association 26 (1): 76–80.
   PubMedGoogle Scholar
• Shirk, J. L., H. L. Ballard, C. C. Wilderman, T. Phillips, A. Wiggins, R. Jordan, E. McCallie, et al. 2012. “Public Participation in Scientific Research: A Framework for Deliberate Design.” Ecology and Society 17 (2): 29.
   Web of Science ®Google Scholar
• Silbey, J. 2015. The Eureka Myth: Creators, Innovators, and Everyday Intellectual Property. Stanford, CA: Stanford University Press.
   Google Scholar
• Trejo, M., I. Canfield, J. O. Robinson, and C. J. Guerrini. 2021. “How Biomedical Citizen Scientists Define What They Do: It’s All in the Name.” AJOB Empirical Bioethics 12 (1): 63–70.
   PubMedGoogle Scholar
• Vayena, E., and J. Tasioulas. 2015. “’We the Scientists’: A Human Right to Citizen Science.” Philosophy and Technology 28: 479–485.
   Google Scholar
• von Hippel, E. 2005. Democratizing Innovation. Cambridge, MA: MIT Press.
   Google Scholar
• Wohlsen, M. 2014. “This Robot Could Make Creating New Life Forms as Easy as Coding an App.” Wired, November 20. Accessed June 21, 2021. https://www.wired.com/2014/11/opentrons-bio-robots/.
   Google Scholar