The internet is increasingly providing opportunities for "citizen scientists" to participate in the design and conduct of research outside of traditional scientific institutions. These initiatives are becoming prevalent in the field of genomics, where websites collect genetic sequencing data for research use and portals connect individuals to genomic studies seeking varying levels of involvement, including self-experimentation.
At the same time, these bottom up participant-driven approaches to scientific investigation raise new questions regarding who owns the results and outcomes of this research. The issue of ownership is critically important to the research enterprise because owners of research outputs have rights associated with their disclosure, patenting, commercialization, and licensing. However, it is not yet known how genomic citizen science initiatives are actually addressing these conflicts in practice, or the extent to which those approaches are consistent with the ethical claims, non-property rights, values, and preferences of participants.
This project involves:
- A landscape analysis of existing and emerging U.S.-based citizen science initiatives involving genetic data.
- Semi-structured interviews of genomic citizen science leaders and participants to explore conceptualizations, assumptions, and preferences related to ownership.
- A legal and ethical analysis of citizen scientists' ownership interests in research outputs.
Supported by: DI-2017C2-7726, Patient-Centered Outcomes Research Institute
Guerrini,CJ, Contreras, JL, Bash Brooks W, Canfield I, Trejo M, McGuire AL. “Idealists and capitalists”: ownership attitudes and preferences in genomic citizen science, New Genetics and Society, 2022; 41:2, 74-95, DOI: 10.1080/14636778.2022.2063827
Guerrini CJ, Crossnohere NL, Rasmussen L, Bridges JFP. A best–worst scaling experiment to prioritize concern about ethical issues in citizen science reveals heterogeneity on people-level v. data-level issues. Sci. Rep. 2021; 11:19119.
Trejo M, Canfield I, Bash Brooks W, Pearlman A, Guerrini CJ. “A cohort of pirate ships”: biomedical citizen scientists’ attitudes towards ethical oversight. Citiz Sci. 2021; 6:15.
M. Trejo, I. Canfield, J.O. Robinson, C.J. Guerrini. How Biomedical Citizen Scientists Define What They Do: It’s All in the Name, AJOB Empir Bioeth, 2021; 12:1, 63-70. doi: 10.1080/23294515.2020.1825139
Guerrini CJ, Trejo M, Canfield I, McGuire AL. Core values of genomic citizen science: results of an interview study. Biosocieties. 2020; doi:10.1057/s41292-020-00208-2.
Guerrini CJ, Sherkow JS, Meyer MN, Zettler PJ. Self-experimentation, ethics, and regulation of vaccines. Science. 2020; 369(6511):1570-72.
Guerrini,CJ, Contreras, JL. Credit for and Control of Research Outputs in Genomic Citizen Science, 21 Annu. Rev. Genomics & Hum. Genet.; 2020, 465.
C.J. Guerrini, J.K. Wagner, S.C. Nelson, G.H. Javitt, A.L. McGuire. Who’s on Third?: Regulation of Third-Party Genetic Interpretation Services, 22 Genet. Med. 2020; 4-11.
Guerrini CJ, Lewellyn MJ, Majumder MA, McGuire AL. Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs? BMC Med Ethics, 2019; 20:84.
Guerrini CJ, Spencer GE, Zettler PJ. DIY CRISPR. North Carolina Law Review. 2019; Available at SSRN 3365421
Guerrini CJ, Majumder MA, Lewellyn MJ, McGuire AL. Citizen science, public policy. Science. 2018; 361:134-136.
Guerrini CJ, Robinson JO, Petersen D, McGuire AL. Should police have access to genetic genealogy databases? Capturing the Golden State Killer and other criminals using a controversial new forensic technique. PLoS Biol. 2018; 16:e2006906. doi: 10.1371/journal.pbio.2006906
Ram N, Guerrini CJ, McGuire AL. Incidental informants: genealogy databases and the future of criminal investigation. Science. 2018; 360:1078-1079.
"Management of Claims to Research Outputs in Genomic Citizen Science: Practices and Perspectives," NIH Citizen Science Working Group (webinar format) (Apr. 2019).
"DIY Genomics," Baylor College of Medicine Health & Science Policy Research Day (Houston, TX, Mar. 2019).
"Ownership in Citizen Science," Baylor College of Medicine Health & Science Policy Research Day (Houston, TX, Mar. 2019)
"DIY CRISPR," North Carolina Law Review Annual Symposium (Chapel Hill, NC, Oct. 2018).
"How is Genomic Citizen Science Managing Interests in Research Outcomes?," American Society for Bioethics and Humanities Annual Meeting (Anaheim, CA, Oct. 2018).
"IP Policies in Genomic Citizen Science," National Human Genome Research Institute Annual Training Meeting (Los Angeles, CA, Mar. 2018).
"The Ethics of Ownership in Citizen Science," American Society for Bioethics and Humanities Annual Meeting (Kansas City, MO, Oct. 2017).
"Citizen Science: Definition and Landscape," Addressing ELSI Issues in Unregulated Health Research Using Mobile Devices (San Diego, CA, Oct. 2017).