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

Abstract

BackgroundCitizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. 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.MethodsWe queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants’ access to and control over research outputs.ResultsThis analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants’ access to research outputs, including datasets and published findings, none supported participants’ control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs.ConclusionsThere are opportunities for citizen science initiatives to incorporate more features that support participants’ access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities.

Credit for and Control of Research Outputs in Genomic Citizen Science

“…Although we acknowledge that no definition of citizen science is without controversy, in this review, we define citizen science to encompass any activity that has a scientific objective and involves public participants in ways other than, or in addition to, passively allowing others to collect and analyze their personal data or biospecimens. This broad definition may have the effect of validating misappropriations of citizen science rhetoric (63,140), but we believe it is preferable to narrower definitions because it errs on the side of respecting the decisions of projects to self-identify as citizen science and is consistent with the ethos of inclusiveness that is said to be a hallmark of citizen science (124).…”

“…In addition to terms of use, which are relatively passive legal controls, citizen scientists might negotiate contractual arrangements that address the downstream release and use of research outputs. Some contracts used by genomic citizen science initiatives are relatively short and standardized and include citizen scientists' assignment of their IP rights to affiliated institutions (63). Other contracts, however, are individually negotiated and highly customized.…”

“…Accordingly, the BioBricks Foundation requires that contributors of biological parts not assert patents covering those parts against users who have made reciprocal commitments (60). Meanwhile, genomic citizen science initiatives such as MyGene2, an online rare disease portal that connects patients with each other and researchers, have made public commitments not to obtain patents covering their research or otherwise to profit from the contributions of citizen scientists (63). Conversely, some biohackers have expressed interest in obtaining patents for the sole purpose of dedicating the covered inventions to the public, thereby frustrating efforts by others to patent, and consequently restrict access to, the same inventions (C.J.…”

“…By contrast, communicating results appears to be a priority for many genomic citizen science initiatives. One study of 22 initiatives found that almost 75% of those that had generated peerreviewed publications facilitated access to them by providing direct links on project websites (63). Moreover, almost all of the identified articles were published in open access journals (63).…”

Who Are the People in Your Neighborhood? Personas Populating Unregulated mHealth Research

“…Although the definition of citizen science is contested and evolving, 15 it is typically described as an approach to scientific inquiry in which members of the public participate in ways other than, or in addition to, allowing personal data or biospecimens to be collected from them for analysis by others. 16 Public participation can take many forms and includes generating hypotheses, collecting or analyzing data, or disseminating results. 17 Given that some mHealth research is conducted by citizen scientists, 18 it is appropriate that the description of individuals who participate in this space also is broad and inclusive.…”