Guerrini Christi J, Contreras Jorge L, Brooks Whitney Bash, Canfield Isabel, Trejo Meredith, McGuire Amy L
Center for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030.
S.J. Quinney College of Law and School of Medicine, University of Utah, Salt Lake City, Utah 84112.
New Genet Soc. 2022;41(2):74-95. doi: 10.1080/14636778.2022.2063827. Epub 2022 May 13.
The perspectives of genomic citizen scientists on ownership of research outputs are not well understood, yet they are useful for identifying alignment of participant expectations and project practices and can help guide efforts to develop innovative tools and strategies for managing ownership claims. Here, we report findings from 52 interviews conducted in 2018 and 2019 to understand genomic citizen science stakeholders' conceptualizations of, experiences with, and preferences for ownership of research outputs. Interviewees identified four approaches for recognizing genomic citizen scientists' ownership and related credit interests in research outputs: shared governance via commons models; fractional ownership of benefits; full and creative attribution; and offensive and defensive patenting. Interviewees also agreed that the model selected by any project should at least maximize access to research outputs and, as appropriate and to the extent possible, broadly distribute rights of control and entitlements to research benefits.
基因组公民科学家对研究成果所有权的看法尚未得到充分理解,但它们有助于确定参与者期望与项目实践的一致性,并有助于指导开发用于管理所有权主张的创新工具和策略。在此,我们报告2018年和2019年进行的52次访谈的结果,以了解基因组公民科学利益相关者对研究成果所有权的概念化、经历及偏好。受访者确定了四种认可基因组公民科学家对研究成果的所有权及相关荣誉利益的方法:通过共有模式进行共同治理;利益的部分所有权;充分且具有创造性的归属;以及攻击性和防御性专利申请。受访者还一致认为,任何项目选择的模式应至少最大限度地增加对研究成果的获取,并在适当且可能的范围内广泛分配控制权和研究利益的权利。