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.
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"After the Golden State Killer: Police Access to Genetic Data" Baylor College of Medicine Alumni Weekend Luncheon (Houston, TX, May 2019)
"Management of Claims to Research Outputs in Genomic Citizen Science: Practices and Perspectives," NIH Citizen Science Working Group (webinar format) (Apr. 2019).
"Personal Genomes and the Police: Public Opinion and Ethical Considerations," Personal Genomes Conference (Hinxton, Cambridge, UK, 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).