Why We Cant 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: 8529747
• 负责人: Carlos Daniel Bustamante
• 金额: $ 4.39万
• 依托单位: UNIVERSITY OF MIAMI SCHOOL OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-05-30 至 2014-05-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8529747
• 关键词: Address; Admixture; Advocacy; Advocate; American; Attitude; Awareness; Behavior; Caring; Clinical; Communities; Data; Diagnosis; Disadvantaged; Disease; Education; Ethicists; Ethnic Origin; Foundations; Future; Genes; Genetic; Genetic Research; Genetic Risk; Genomics; Goals; Government; Health; Health Professional; Healthcare; Healthcare Systems; Hispanics; Human Genome Project; Individual; Industry; Institutes; International; Latino; Learning; Measurement; Medicine; Minority; Minority Groups; Mutation; National Human Genome Research Institute; Not Hispanic or Latino; Outcome; Policies; Policy Maker; Population; Population Heterogeneity; Prevention; Public Health; Publishing; Race; Research; Research Personnel; Risk; Role; Solutions; Specialist; Strategic Planning; Technology; Time; Translating; Translational Research; Translations; United States; United States National Institutes of Health; clinical application; clinical practice; health disparity; improved; interest; meetings; member; minority health; profession allied to medicine; public health relevance; response; success; symposium

DESCRIPTION (provided by applicant): Health disparities marginalize many racial and ethnic minorities within the American health care system. Despite steady improvement in the overall health of the United States, individuals within these 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. The negative effects of this underrepresentation can already be seen in some of the current applications of genomic medicine. In addition, the paradigm shift in healthcare 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. 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 data that has emerged since 2008, specifically with regard to the unique issues raised by sequencing. We also plan to tie in the results of our discussion groups with extant initiatives and policies set forth by NIH health disparity agencies and publish the results of the forum to make it widely available to researchers and health professionals unable to attend the conference.

描述（由申请人提供）：健康差异使美国医疗保健系统中的许多种族和族裔边缘化。尽管美国的整体健康状况稳步改善，但这些服务不足的群体中的个人仍然更容易受到护理失误的影响，并且出现健康问题的风险也更大。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。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，医疗保健范式的转变也可能加剧健康差异。补救健康差异会议旨在学习、识别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。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进行互动，并将包括自 2008 年以来出现的数据，特别是关于独特的测序引起的问题。 我们还计划将讨论小组的结果与 NIH 健康差异机构制定的现有举措和政策结合起来，并发布论坛结果，以供无法参加会议的研究人员和卫生专业人员广泛使用。