BACKGROUND Citizen 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. METHODS We 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. RESULTS This 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. CONCLUSIONS There 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.

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捐助者、作者和所有者：基因组公民科学如何解决研究成果的利益？

背景技术公民科学在生物医学科学中越来越普遍，包括人类基因组学领域。基因组公民科学倡议为让个人参与科学发现提供了新的机会，但它们也引发了关于谁拥有研究成果的新问题，包括无形的想法和发现以及有形的著作、工具、技术和产品。随着参与者在数量和质量上更多地参与研究过程，参与者对研究成果的法律和道德要求变得更强，也更有可能与机构研究人员和其他利益相关者发生冲突。然而，目前尚不清楚基因组公民科学倡议如何管理参与者在实践中获取和控制研究成果的利益。为了帮助填补这一空白，我们对美国基因组公民科学计划的相关政策和实践进行了深入审查。方法 我们查询了同行评审文献和灰色文献，以确定 22 项满足六项纳入标准的基因组公民科学计划。数据收集表格用于捕获与参与者获取和控制研究成果相关的倡议特征、政策和实践。结果这项分析表明，基因组公民科学领域是多种多样的，包括许多没有机构隶属关系的倡议。确定了两个明显紧张的趋势：开放哲学的商业化和运作化。虽然大多数举措支持参与者获取研究成果，包括数据集和已发表的研究结果，但没有一个举措支持参与者通过知识产权、许可或商业化权控制结果。然而，一些倡议放弃了从产出中获利的权利。结论 公民科学倡议有机会纳入更多功能，支持参与者获取和控制研究成果，并与其具体目标、操作和技术能力相一致。