Core values of genomic citizen science: results from a qualitative interview study
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作者:
Christi J. Guerrini
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机构:Baylor College of Medicine,Center for Medical Ethics and Health Policy
Christi J. Guerrini
Meredith Trejo
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机构:Baylor College of Medicine,Center for Medical Ethics and Health Policy
Meredith Trejo
Isabel Canfield
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机构:Baylor College of Medicine,Center for Medical Ethics and Health Policy
Isabel Canfield
Amy L. McGuire
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机构:Baylor College of Medicine,Center for Medical Ethics and Health Policy
Amy L. McGuire
机构:
[1] Baylor College of Medicine,Center for Medical Ethics and Health Policy
来源:
BioSocieties
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2022年
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17卷
关键词:
Citizen science;
Community science;
Biohacking;
ELSI;
Genetic privacy;
D O I:
暂无
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学科分类号:
摘要:
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.
机构:
Murdoch Univ, Harry Butler Inst, South St, Perth, WA 6150, AustraliaMurdoch Univ, Harry Butler Inst, South St, Perth, WA 6150, Australia
Simpson, Greg D.
Parker, Jackie
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机构:
Murdoch Univ, Harry Butler Inst, South St, Perth, WA 6150, AustraliaMurdoch Univ, Harry Butler Inst, South St, Perth, WA 6150, Australia
Parker, Jackie
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机构:
Gibbens, Erin
Ladd, Philip G.
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机构:
Murdoch Univ, Coll Sci Hlth Engn & Educ, Environm & Conservat Sci, South St, Perth, WA 6150, AustraliaMurdoch Univ, Harry Butler Inst, South St, Perth, WA 6150, Australia
机构:
Univ Regina, Johnson Shoyama Grad Sch Publ Policy, 2155 Coll Ave, Regina, SK S4P 4V5, CanadaUniv Regina, Johnson Shoyama Grad Sch Publ Policy, 2155 Coll Ave, Regina, SK S4P 4V5, Canada
Kannan, Prasanna
Bhawra, Jasmin
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机构:
Univ Saskatchewan, Johnson Shoyama Grad Sch Publ Policy, 101 Diefenbaker Pl, Saskatoon, SK S7N 5B8, CanadaUniv Regina, Johnson Shoyama Grad Sch Publ Policy, 2155 Coll Ave, Regina, SK S4P 4V5, Canada
Bhawra, Jasmin
Patel, Pinal
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h-index: 0
机构:
Univ Regina, Johnson Shoyama Grad Sch Publ Policy, 2155 Coll Ave, Regina, SK S4P 4V5, CanadaUniv Regina, Johnson Shoyama Grad Sch Publ Policy, 2155 Coll Ave, Regina, SK S4P 4V5, Canada
Patel, Pinal
Katapally, Tarun Reddy
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h-index: 0
机构:
Western Univ, Fac Hlth Sci, 1151 Richmond St, London, ON N6A 5B9, CanadaUniv Regina, Johnson Shoyama Grad Sch Publ Policy, 2155 Coll Ave, Regina, SK S4P 4V5, Canada