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.

在新兴的精准医疗时代，越来越多的人呼吁多样化和个性化

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

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

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