"伦理责任常常被淹没":基因组科学家和 ELSI 学者对 ELSI 专业知识的作用和相关性的定性访谈研究》(A Qualitative Interview Study of Genome Scientists' and ELSI Scholars' Perspectives on the Role and Relevance of ELSI Expertise)。

Q1 Arts and Humanities AJOB Empirical Bioethics Pub Date : 2024-10-01 Epub Date: 2024-06-25 DOI:10.1080/23294515.2024.2370769
Daphne O Martschenko, Anna Granucci, Mildred K Cho
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引用次数: 0

摘要

背景:基因组科学家和遗传学的伦理、法律和社会影响(ELSI)学者通常居住在不同的研究文化中--使用不同的研究方法,提出不同的研究问题,重视不同类型的知识。人们经常呼吁这两个群体开展合作,以加强基因组学研究的道德操守。然而,在定性比较基因组科学家和 ELSI 学者对彼此合作的看法以及可能影响这些合作的因素方面,却鲜有研究。方法:2021 年 6 月至 9 月期间,对美国的基因组科学家和 ELSI 学者进行了 20 次半结构式访谈。采用归纳式主题分析法对访谈进行分析:基因组科学家和 ELSI 学者对彼此合作的价值和目标有着不同的理解。基因组科学家大多认为ELSI的专业知识与人类课题研究相关;他们将ELSI学者描述为帮助公众和/或研究参与者更好地理解基因组学研究的传播者。相比之下,ELSI 学者认为自己是政策的制定者和执行者;他们对科学家如何误解自己的研究方法或对其产生负面看法表示沮丧。结构性因素(如晋升标准)和文化因素(如对同事的价值和尊重的看法)似乎共同塑造了这些不同的观点:学术机构、资助者和研究人员普遍呼吁基因组科学家与 ELSI 学者开展合作,但却没有充分考虑到他们不同的概念框架、研究方法、目标、规范和价值观是如何共同影响这种合作关系的。承认、探讨和解决这些因素之间复杂的相互作用,有助于更有效地促进基因组科学家与 ELSI 学者之间的合作。
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"Ethical Responsibility Very Often Gets Drowned Out": A Qualitative Interview Study of Genome Scientists' and ELSI Scholars' Perspectives on the Role and Relevance of ELSI Expertise.

Background: Genome scientists and Ethical, Legal, and Social Implications of genetics (ELSI) scholars commonly inhabit distinct research cultures - utilizing different research methods, asking different research questions, and valuing different types of knowledge. Collaborations between these two communities are frequently called for to enhance the ethical conduct of genomics research. Yet, little has been done to qualitatively compare genome scientists' and ELSI scholars' perspectives on collaborations with each other and the factors that may affect these collaborations.

Methods: 20 semi-structured interviews with US-based genome scientists and ELSI scholars were conducted between June-September 2021. Interviews were analyzed using inductive thematic analysis.

Results: Genome scientists and ELSI scholars provided different understandings of the value and goals of their collaborations with each other. Genome scientists largely perceived ELSI expertise to be relevant for human subjects research; they described ELSI scholars as communicators who help the public and/or study participants better understand genomics research. In comparison, ELSI scholars viewed themselves as developing and implementing policies; they expressed frustration at how scientists can misunderstand their research methods or negatively perceive them. A combination of factors - both structural (e.g., criteria for promotion) and cultural (e.g., perceptions of what colleagues value and respect) - seemed to shape these diverging perspectives.

Conclusion: Academic institutions, funders, and researchers commonly call for collaborations between genome scientists and ELSI scholars, but under-consider how their different conceptual frameworks, research methods, goals, norms, and values, conjoin to affect such partnerships. Acknowledging, exploring, and addressing the complex interplay between these factors could help to more effectively facilitate collaborations between genome scientists and ELSI scholars.

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来源期刊
AJOB Empirical Bioethics
AJOB Empirical Bioethics Arts and Humanities-Philosophy
CiteScore
3.90
自引率
0.00%
发文量
21
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