The Ethics of Inclusion: Conceptualizing Diversity in Genomics Research

包容性伦理：基因组学研究多样性的概念化

• 批准号: 9764407
• 负责人: Sandra Soo-Jin Lee
• 金额: $ 8.1万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-01-01 至 2021-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9764407
• 关键词: Address; Applications Grants; Attention; Beneficence; Clinical Medicine; Consent; DNA; Dimensions; Disease; Disease Management; Economics; Enrollment; Ethics; Ethnic group; Funding; Genetic; Genetic Polymorphism; Genetic Research; Genetic Services; Genomics; Goals; Human; Human Genetics; International; Justice; Link; Literature; Medical; Medicine; Participant; Patients; Policy Maker; Population; Principal Investigator; Process; Race; Research; Research Personnel; Research Project Grants; Resources; Sampling; Scientist; Social Environment; Technology; Time; Underrepresented Groups; United States National Institutes of Health; Work; benefit sharing; biobank; clinically significant; cohort; genetic variant; health disparity; lens; multidisciplinary; population based; precision medicine; racial and ethnic; recruit; repository; social

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.

在精准医学的新兴时代，人们越来越多地呼吁多样性和 将历史上代表性不足的种族和族裔人口纳入生物库和 精准医学研究。最近的发现表明，基因多样性的缺乏 资料库可能会对识别临床上存在的基因变异构成严重挑战 在某些人群中意义重大。这些担忧与道德方面的担忧有关 种族和族裔群体之间在健康和疾病方面的差异。尽管越来越多地审查 在基因组学研究中，招募工作的多样性，很少有研究整合 与讨论多样性有关的科学、社会和伦理问题。这个项目 旨在提供一个多元化的概念框架，该框架是多学科的，并考虑到 在基因组学中引用多样性的历史和社会背景。这样做的具体目的是 研究内容包括： 目的1：研究基于种群的基因组学中关于人类多样性和差异的论述 随着时间的推移，研究已经发生了变化。 目标2：确定包含多样性对研究人员-参与者的伦理影响 关系，包括与“招募”、“同意”、“集体伤害”有关但不限于的问题 和“利益分享”。 目标3.为基因组学研究中的多样性制定一个概念框架，以解决伦理问题 尊重、仁慈和正义的价值观。

项目成果

Response to Open Peer Commentaries: Distinguishing the "Gift" from "Donation" as a Path toward Reciprocity and Relational Ethics.

• DOI: 10.1080/15265161.2021.1905102
• 发表时间: 2021-04
• 期刊: The American journal of bioethics : AJOB
• 作者: Lee SS

Health equality, race and pharmacogenomics.

• DOI: 10.1111/bcp.14983
• 发表时间: 2022-01
• 期刊: British journal of clinical pharmacology
• 影响因子: 3.4
• 作者: Magavern EF;Gurdasani D;Ng FL;Lee SS
• 通讯作者: Lee SS

Excavating the Personal Genome: The Good Biocitizen in the Age of Precision Health.

• DOI: 10.1002/hast.1156
• 发表时间: 2020-05
• 期刊: The Hastings Center report
• 作者: Lee SS

Obligations of the "Gift": Reciprocity and Responsibility in Precision Medicine.

• DOI: 10.1080/15265161.2020.1851813
• 发表时间: 2021-04
• 期刊: The American journal of bioethics : AJOB
• 作者: Lee SS