Why We Can't Wait: Conference to Eliminate Health Disparities in Genomics

为什么我们不能等待：消除基因组学健康差异的会议

• 批准号: 8785928
• 负责人: Carlos Daniel Bustamante
• 金额: $ 5万
• 依托单位: UNIVERSITY OF MIAMI SCHOOL OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-07-10 至 2015-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8785928
• 关键词: Address; Admixture; Advocacy; Advocate; Attitude; Awareness; Behavior; Caring; Clinical; Communities; Data; Diagnosis; Disadvantaged; Disease; Education; Epigenetic Process; Ethicists; Ethnic Origin; European; Foundations; Future; Genes; Genetic; Genetic Research; Genetic Risk; Genomics; Goals; Health; Health Professional; Healthcare; Hispanics; Human Genome Project; Individual; Industry; Institutes; International; Internet; Interview; Latino; Learning; Measurement; Medical; Medicine; Minority; Mutation; National Human Genome Research Institute; Not Hispanic or Latino; Outcome; Participant; Policies; Policy Maker; Population; Population Heterogeneity; Prevention; Provider; Public Health; Race; Research; Research Infrastructure; Research Personnel; Risk; Role; Solutions; Specialist; Strategic Planning; Technology; Time; Translating; Translational Research; Translations; Underrepresented Minority; United States; United States National Institutes of Health; clinical application; clinical practice; health disparity; improved; interest; meetings; member; minority health; new technology; profession allied to medicine; public health relevance; response; success; symposium

DESCRIPTION (provided by applicant): Despite steady improvement in the overall health of the United States, individuals within underserved groups continue to be more vulnerable to lapses in care and are at increased risk for health problems. Health disparities have had an especially profound effect on the overall health of Hispanics/Latinos and Blacks in the United States. Genetic advances hold extreme promise, but also the potential to further increase health disparities. To promote equitable dissemination of the benefits of genomic medicine, genomic and translational research must be performed in diverse populations. Unfortunately, minority populations are underrepresented in most research, including genetic research. Upwards of 96% of participants in genetic studies are of European ancestry. The negative effects of this underrepresentation can already be seen in some of the current applications of genomic medicine. In addition, changes in healthcare infrastructure resulting from genetically tailored care may also fuel health disparities. The Conference to Remedy Health Disparities aims to learn, identify, and discuss many of the challenges and possible solutions for addressing health disparities in genomic medicine, particularly with regard to policy (the theme of this year's conference). The conference will place greater emphasis on issues specific to the Latino/Hispanic and Black communities; will bring together a wider range of stakeholders who would not otherwise have the opportunity to interact; and will include recent data, specifically with regard to the unique issues raised by new technologies such as sequencing and epigenetics. We also plan to disseminate the content of the conference on the web to make it widely available to researchers and health professionals unable to attend the conference. Also, we will continue to record interviews of a selection of attendees and speakers about this topic, which we also plan to also make available for large scale dissemination.

描述（由申请人提供）：尽管美国的整体健康状况稳步改善，但服务不足群体中的个人仍然更容易出现护理失误，并且出现健康问题的风险也增加。健康差异对美国西班牙裔/拉丁裔和黑人的整体健康产生了特别深远的影响。基因进步带来了极大的希望，但也有可能进一步扩大健康差距。为了促进基因组医学益处的公平传播，基因组和转化研究必须在不同人群中进行。不幸的是，少数群体在大多数研究中代表性不足，包括基因研究。超过 96% 的基因研究参与者有欧洲血统。这种代表性不足的负面影响已经可以在基因组医学当前的一些应用中看到。此外，基因定制护理带来的医疗基础设施的变化也可能加剧健康差异。补救健康差异会议旨在学习、确定和讨论解决基因组医学健康差异的许多挑战和可能的解决方案，特别是在政策方面（今年会议的主题）。会议将更加重视拉丁裔/西班牙裔和黑人社区的具体问题；将汇集更广泛的利益相关者，否则他们将没有机会互动；并将包括最新数据，特别是关于测序和表观遗传学等新技术提出的独特问题的数据。我们还计划在网络上传播会议内容，以便无法参加会议的研究人员和卫生专业人员广泛使用。此外，我们将继续录制有关该主题的精选与会者和演讲者的采访，我们也计划将其进行大规模传播。