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

IF 1.3 4区医学 Q4 SOCIAL SCIENCES, BIOMEDICAL

Biosocieties Pub Date : 2022-06-01 DOI:10.1057/s41292-020-00208-2

Christi J Guerrini, Meredith Trejo, Isabel Canfield, Amy L McGuire

引用次数: 10

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.

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基因组公民科学的核心价值:一项定性访谈研究的结果。

促进公众参与基因信息研究或操纵的基因组公民科学倡议正在蓬勃发展。这些倡议是多种多样的，范围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。理解公民科学家与他们的活动和社区联系在一起的价值观可以对公民科学的政策制定有用。在这里，我们报告了与基因组公民科学中38个利益相关者的定性访谈的价值相关数据。应用一个理论框架，将价值观描述为对理想的最终状态或行为的超越信念，可以根据他们表达的动机目标和他们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，安全和团结。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Biosocieties SOCIAL SCIENCES, BIOMEDICAL-

CiteScore

3.40

自引率

6.20%

发文量

期刊介绍： BioSocieties is committed to the scholarly exploration of the crucial social, ethical and policy implications of developments in the life sciences and biomedicine. These developments are increasing our ability to control our own biology; enabling us to create novel life forms; changing our ideas of ‘normality’ and ‘abnormality’; transforming our understanding of personal identity, family relations, ancestry and ‘race’; altering our social and personal expectations and responsibilities; reshaping global economic opportunities and inequalities; creating new global security challenges; and generating new social, ethical, legal and regulatory dilemmas. To address these dilemmas requires us to break out from narrow disciplinary boundaries within the social sciences and humanities, and between these disciplines and the natural sciences, and to develop new ways of thinking about the relations between biology and sociality and between the life sciences and society. BioSocieties provides a crucial forum where the most rigorous social research and critical analysis of these issues can intersect with the work of leading scientists, social researchers, clinicians, regulators and other stakeholders. BioSocieties defines the key intellectual issues at the science-society interface, and offers pathways to the resolution of the critical local, national and global socio-political challenges that arise from scientific and biomedical advances. As the first journal of its kind, BioSocieties publishes scholarship across the social science disciplines, and represents a lively and balanced array of perspectives on controversial issues. In its inaugural year BioSocieties demonstrated the constructive potential of interdisciplinary dialogue and debate across the social and natural sciences. We are becoming the journal of choice not only for social scientists, but also for life scientists interested in the larger social, ethical and policy implications of their work. The journal is international in scope, spanning research and developments in all corners of the globe. BioSocieties is published quarterly, with occasional themed issues that highlight some of the critical questions and problematics of modern biotechnologies. Articles, response pieces, review essays, and self-standing editorial pieces by social and life scientists form a regular part of the journal.