Core values of genomic citizen science: results from a qualitative interview study
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Core values of genomic citizen science: results from a qualitative interview study Christi J. Guerrini1 · Meredith Trejo1 · Isabel Canfield1 · Amy L. McGuire1
Accepted: 26 September 2020 © Springer Nature Limited 2020
Abstract Genomic citizen science initiatives that promote public involvement in the study or manipulation of genetic information are flourishing. These initiatives are diverse and range from data donation studies, to biological experimentation conducted in home and community laboratories, to self-experimentation. Understanding the values that citizen scientists associate with their activities and communities can be useful to policy development for citizen science. Here, we report values-relevant data from qualitative interviews with 38 stakeholders in genomic citizen science. Applying a theoretical framework that describes values as transcendent beliefs about desirable end states or behaviors that can be categorized according to the motivational goals they express and the interests they serve, we identified nine core values of genomic citizen science: altruism, autonomy, fun, inclusivity, openness, reciprocity, respect, safety, and solidarity. Keywords Citizen science · Community science · Biohacking · ELSI · Genetic privacy
Background Citizen science initiatives that promote public involvement in research are on the rise (Hecker et al. 2018). There is no universally agreed upon definition of citizen science (Ceccaroni et al. 2017; Eitzel et al. 2017; Kullenberg and Kasperowski 2016), but a common formulation describes citizen science as an approach to scientific inquiry in which members of the public make meaningful contributions to * Christi J. Guerrini [email protected] 1
Center for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, USA Vol.:(0123456789)
C. J. Guerrini et al.
the research process. Such contributions can include identifying research questions, shaping study design, collecting and analyzing data, and reporting results (Shirk et al. 2012). Historically, ecology, environmental science studies, and astronomy have dominated the citizen science landscape (Bonetta 2009; Wiggins and Wilbanks 2019). Over the years, however, citizen science has spread to other disciplines, including the biomedical sciences (Bonetta 2009). Biomedical citizen science projects involving genetic information in particular are flourishing as a result of easier access to personal genetic data from direct-to-consumer (DTC) genetic testing services and clinical testing laboratories and an expanding landscape of online tools and platforms that help individuals interpret and share those data for research purposes (Guerrini et al. 2020; Nelson and Fullerton 2018; Thorogood et al. 2018). Decreasing costs and other barriers associated with obtaining scientific equipment and information (Guerrini et al. 2019b; Meyer 2013), as well as the accelerating speed at which biotechnologies are transitioning from being accessible to only well-resourced specialists to
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