“Idealists and capitalists”: ownership attitudes and preferences in genomic citizen science

Abstract

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.

An Ethics Framework for Evaluating Ownership Practices in Biomedical Citizen Science

“…The project's participants might be comfortable, for example, with a plan that gives type II diabetic participants two times the profit share of other participants, but what about thirty times? As we heard during interviews with genomic citizen science stakeholders (Guerrini et al 2022), at a certain point, the difference becomes indefensible. Identifying that point is challenging and context dependent, but factors to consider include the distribution ratio (e.g., 1:2 v. 1:30) and absolute value of the benefits (e.g., $2 v. $4, $2,000 v. $60,000).…”

“…Empirical studies have described citizen science project practices related to accessing, controlling, and sharing in the benefits of outputs, with a focus on data sets, and probed relevant perspectives of citizen science practitioners, participants, and scholars (Borda, Gray, and Fu 2019;Bowser et al 2020;Guerrini et al 2019;Guerrini et al 2022). Potential legal claims of citizen scientists to project outputs also have been examined (Guerrini and Contreras 2020;Scassa and Chung 2015a,b).…”