The Ethics of Inclusion: Conceptualizing Diversity in Genomics Research

在精准医疗的新兴时代，人们越来越多地呼吁多样化， 将历史上代表性不足的种族和族裔人口纳入生物库， 精准医学研究 最近的研究结果表明，缺乏遗传多样性， 基因库可能对识别临床上 在某些人群中很重要。 这些问题与道德问题有关， 种族和族裔群体之间在健康和疾病方面的差异。 尽管越来越多的审查 在基因组学研究中，招募工作的多样性，很少有研究整合 科学、社会和伦理方面的关切与关于多样性的讨论有关。 这个项目 旨在提供一个多学科的多样性概念框架，并考虑到 在基因组学中，多样性被援引的历史和社会背景。 具体目标是 研究是： 目的1：探讨基于群体基因组学的人类多样性和差异性话语 研究随着时间的推移而改变。 目标2：确定研究人员-参与者纳入多样性的伦理影响 关系，包括有关但不限于“招募”、“同意”、“群体伤害”等问题 “利益共享”。 目标3.为基因组学研究的多样性制定一个概念框架， 尊重、仁慈和正义的价值观。

In the emerging era of precision medicine, there have been increasing calls for diversity and the inclusion of historically under-represented racial and ethnic populations in biobanking and precision medicine research. Recent findings suggest that the lack of diversity in genetic repositories may pose serious challenges to identify genetic variants that are clinically significant in certain populations. These concerns have been linked to ethical concerns over disparities in health and disease among racial and ethnic groups. Despite increasing scrutiny of diversity in recruitment efforts in genomics research, there are few studies that integrate scientific, social and ethical concerns that are attached to discourse on diversity. This project aims to provide a conceptual framework of diversity that is multi-disciplinary and takes into the historical and social context in which diversity is invoked in genomics. The specific aims of this research are: Aim 1: To investigate how discourse on human diversity and difference in population based genomics research has changed over time. Aim 2: To identify the ethical implications for inclusion of diversity for researcher-participant relationships, including issues related but not limited to “recruitment,” “consent,” “group harm” and “benefit-sharing.” Aim 3. To develop a conceptual framework for diversity in genomics research that addresses ethical values of respect, beneficence and justice.