Literature DB >> 36032504

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

Christi J Guerrini1, Meredith Trejo1, Isabel Canfield1, Amy L McGuire1.   

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 that 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.

Entities:  

Keywords:  ELSI; biohacking; citizen science; community science; genetic privacy

Year:  2020        PMID: 36032504      PMCID: PMC9400840          DOI: 10.1057/s41292-020-00208-2

Source DB:  PubMed          Journal:  Biosocieties        ISSN: 1745-8552


  18 in total

1.  Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.

Authors:  Allison Tong; Peter Sainsbury; Jonathan Craig
Journal:  Int J Qual Health Care       Date:  2007-09-14       Impact factor: 2.038

2.  The Rise of Citizen Science in Health and Biomedical Research.

Authors:  Andrea Wiggins; John Wilbanks
Journal:  Am J Bioeth       Date:  2019-08       Impact factor: 11.229

3.  "Bridge to the Literature"? Third-Party Genetic Interpretation Tools and the Views of Tool Developers.

Authors:  Sarah C Nelson; Stephanie M Fullerton
Journal:  J Genet Couns       Date:  2018-02-07       Impact factor: 2.537

4.  Regulating genetic biohacking.

Authors:  Patricia J Zettler; Christi J Guerrini; Jacob S Sherkow
Journal:  Science       Date:  2019-07-05       Impact factor: 47.728

Review 5.  Who's on third? Regulation of third-party genetic interpretation services.

Authors:  Christi J Guerrini; Jennifer K Wagner; Sarah C Nelson; Gail H Javitt; Amy L McGuire
Journal:  Genet Med       Date:  2019-08-12       Impact factor: 8.822

6.  The accelerating pace of biotech democratization.

Authors:  Shawn S Jackson; Louise E Sumner; Christian H Garnier; Casey Basham; Landy T Sun; Peter L Simone; Danielle S Gardner; Rocco J Casagrande
Journal:  Nat Biotechnol       Date:  2019-12       Impact factor: 54.908

7.  European do-it-yourself (DIY) biology: beyond the hope, hype and horror.

Authors:  Günter Seyfried; Lei Pei; Markus Schmidt
Journal:  Bioessays       Date:  2014-04-29       Impact factor: 4.345

8.  Adapting standards: ethical oversight of participant-led health research.

Authors:  Effy Vayena; John Tasioulas
Journal:  PLoS Med       Date:  2013-03-12       Impact factor: 11.069

9.  What Is Citizen Science?--A Scientometric Meta-Analysis.

Authors:  Christopher Kullenberg; Dick Kasperowski
Journal:  PLoS One       Date:  2016-01-14       Impact factor: 3.240

Review 10.  APPLaUD: access for patients and participants to individual level uninterpreted genomic data.

Authors:  Adrian Thorogood; Jason Bobe; Barbara Prainsack; Anna Middleton; Erick Scott; Sarah Nelson; Manuel Corpas; Natasha Bonhomme; Laura Lyman Rodriguez; Madeleine Murtagh; Erika Kleiderman
Journal:  Hum Genomics       Date:  2018-02-17       Impact factor: 4.639

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  1 in total

1.  The Promissory Visions of DIYbio: Reimaging Science from the Fringe.

Authors:  Sonja Erikainen
Journal:  Sci Cult (Lond)       Date:  2022-01-17
  1 in total

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