The Ethical, Legal, and Social Implications (ELSI) Research Program of the National Human Genome Research Institute sponsors research examining ethical, legal, and social issues arising in the context of genetics/genomics. The ELSI Program endorses an understanding of research not as the sole province of empirical study, but instead as systematic study or inquiry, of which there are many types and methods. ELSI research employs both empirical and nonempirical methods. Because the latter remain relatively unfamiliar to biomedical and translational scientists, this paper seeks to elucidate the relationship between empirical and nonempirical methods in ELSI research. It pays particular attention to the research questions and methods of normative and conceptual research, which examine questions of value and meaning, respectively. To illustrate the distinct but interrelated roles of empirical and nonempirical methods in ELSI research, including normative and conceptual research, the paper demonstrates how a range of methods may be employed both to examine the evolution of the concept of incidental findings (including the recent step toward terming them 'secondary findings'), and to address the normative question of how genomic researchers and clinicians should manage incidental such findings.

中文翻译：

---

规范性和概念性 ELSI 研究：它是什么，以及为什么它很重要。

国家人类基因组研究所的伦理、法律和社会影响 (ELSI) 研究计划赞助研究在遗传学/基因组学背景下出现的伦理、法律和社会问题。ELSI 计划支持将研究理解为不是唯一的实证研究领域，而是作为系统研究或探究，其中有多种类型和方法。ELSI 研究采用经验和非经验方法。由于后者对于生物医学和转化科学家来说仍然相对陌生，因此本文试图阐明 ELSI 研究中经验和非经验方法之间的关系。它特别关注规范研究和概念研究的研究问题和方法，分别考察价值和意义问题。