Guerrini Christi J, Trejo Meredith, Canfield Isabel, McGuire Amy L
Baylor College of Medicine, Center for Medical Ethics and Health Policy, 1 Baylor Plaza, Houston, TX 77030.
Biosocieties. 2022 Jun;17(2):203-228. doi: 10.1057/s41292-020-00208-2. Epub 2020 Sep 28.
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.
促进公众参与基因信息研究或操作的基因组公民科学倡议正在蓬勃发展。这些倡议多种多样,从数据捐赠研究到在家庭和社区实验室进行的生物实验,再到自我实验。了解公民科学家赋予其活动和社区的价值观,有助于制定公民科学政策。在此,我们报告了对38位基因组公民科学利益相关者进行定性访谈得到的与价值观相关的数据。应用一个理论框架,该框架将价值观描述为关于理想最终状态或行为的超越性信念,这些信念可根据它们所表达的动机目标和所服务的利益进行分类,我们确定了基因组公民科学的九个核心价值观:利他主义、自主性、乐趣、包容性、开放性、互惠性、尊重、安全性和团结性。