How should biomedical citizen scientists recognize claims to ownership?

The perspectives of biomedical citizen scientists on ownership of research outputs are not well understood, yet they are useful for identifying misalignment of participant expectations and project practices and can help guide efforts to develop strategies for managing ownership claims.

Donors, authors, and owners: How is genomic citizen science addressing interests in research outputs?

Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries, and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger—and also more likely to conflict with those of institution-based researchers and other stakeholders—as participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice.

To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives.

Please cite this paper as: Christi J. Guerrini, Meaganne Lewellyn, Mary A. Majumder, Meredith Trejo, Isabel Canfield & Amy L. McGuire. Donors, Authors, and Owners: How is Genomic Citizen Science Addressing Interests in Research Outputs?, 20 BMC MED. ETHICS 84 (2019).

Credit for and control of research outputs in genomic citizen science

Genomic citizen science initiatives are diverse and involve citizen scientists in collecting genetic data, solving genetic puzzles, and conducting experiments in community laboratories. At the same time that genomic citizen science is presenting new opportunities for individuals to participate in scientific discovery, it is also challenging norms regarding the manner in which scientific research outputs are managed. In this review, we present a typology of genomic citizen science initiatives, describe ethical and legal foundations for recognizing genomic citizen scientists’ claims of credit for and control of research outputs, and detail how such claims are or might be addressed in practice across a variety of initiatives.

Please cite this paper as: Christi J. Guerrini and Jorge L. Contreras. Credit for and Control of Research Outputs in Genomic Citizen Science, 21 ANNU. REV. GENOMICS & HUM. GENET. 465 (2020).

Did you know?

Biomedical citizen scientists want to share their work, but there are barriers to publishing in traditional academic journals.

The cost of publishing Open Access papers is prohibitive for the community. “[M]ost of my friends are broke, nobody’s got $1,000 to throw into publishing a paper but they’ve got the nothing it costs to publish a YouTube video.”

The cost of publishing Open Access papers is prohibitive for the community.

“[M]ost of my friends are broke, nobody’s got $1,000 to throw into publishing a paper but they’ve got the nothing it costs to publish a YouTube video.”

Accessibility is key to the ethos of the open science movement. Biomedical citizen scientists value accessibility over traditional publishing. "I know that there’s a fundamental barrier to entry, especially because the only journals that I’ll go within 100 miles of are Open Access because I absolutely refuse to put anything behind a paywall, because that’s ridiculous…”

Accessibility is key to the ethos of the open science movement. Biomedical citizen scientists value accessibility over traditional publishing.

"I know that there’s a fundamental barrier to entry, especially because the only journals that I’ll go within 100 miles of are Open Access because I absolutely refuse to put anything behind a paywall, because that’s ridiculous…”

Bureaucracy, and the need for IRB review in some cases, is seen as a barrier.“I’m not sure that it should be up to the journal to impose this [IRB] requirement or not… I’m a little bit concerned about presenting a barrier after research is performed to the dissemination of knowledge performed by citizen scientists who don’t have access to institutional review systems.”

Bureaucracy, and the need for IRB review in some cases, is seen as a barrier.

“I’m not sure that it should be up to the journal to impose this [IRB] requirement or not… I’m a little bit concerned about presenting a barrier after research is performed to the dissemination of knowledge performed by citizen scientists who don’t have access to institutional review systems.”