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Core values of genomic citizen science: results from a qualitative interview study

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.

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Acknowledgements

Development of this manuscript was funded by National Human Genome Research Institute Grant K01-HG009355. The authors wish to thank Whitney Bash-Brooks for research assistance.

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Guerrini, C.J., Trejo, M., Canfield, I. et al. Core values of genomic citizen science: results from a qualitative interview study. BioSocieties 17, 203–228 (2022). https://doi.org/10.1057/s41292-020-00208-2

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Keywords

  • Citizen science
  • Community science
  • Biohacking
  • ELSI
  • Genetic privacy