Mesh : Cultural Diversity Vulnerable Populations Research Design Black People Evidence Gaps Biomedical Technology / standards trends Public-Private Sector Partnerships Genomics Ethicists Humans

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Abstract:
Human subjects research and drug and device development currently base their findings largely on the genetic data of the non-Hispanic White population, excluding People of Color. This practice puts People of Color at a distinct and potentially deadly disadvantage in being treated for sickness, disability, and disease, as seen during the COVID-19 pandemic. Major disparities exist in all chronic health conditions, including cancer. Data show that less than 2% of genetic information being studied today originates from people of African ancestry. If genomic datasets do not adequately represent People of Color, new drugs and genetic therapies may not work as well as for people of European descent. Addressing the urgent concern that historically marginalized people may again be excluded from the next technological leap affecting human health and the benefits it will bring will requires a paradigm shift. Thus, on behalf of underserved and marginalized people, we developed the Together for CHANGE (T4C) initiative as a unique collaborative public-private partnership to address the concern. The comprehensive programs designed in the T4C initiative, governed by the Diaspora Human Genomics Institute founded by Meharry Medical College, will transform the landscape of education and health care and positively affect global Black communities for decades to come.
摘要:
目前,人类受试者的研究以及药物和设备的开发主要基于非西班牙裔白人的遗传数据,不包括有色人种。这种做法使有色人种在接受疾病治疗时处于明显且可能致命的劣势,残疾,和疾病,正如在COVID-19大流行期间看到的那样。所有慢性健康状况都存在重大差异,包括癌症.数据显示,目前正在研究的遗传信息中,只有不到2%来自非洲血统的人。如果基因组数据集不能充分代表有色人种,新药和基因疗法对欧洲血统的人来说可能效果不佳。解决历史上被边缘化的人可能再次被排除在影响人类健康的下一次技术飞跃之外的紧迫关切,以及它将带来的好处将需要范式转变。因此,代表得不到充分服务和边缘化的人,我们开发了“一起换”(T4C)倡议,作为一种独特的公私合作伙伴关系,以解决这一问题。T4C计划中设计的综合计划,由梅哈里医学院成立的散居国外的人类基因组学研究所管理,将改变教育和医疗保健的格局,并在未来几十年对全球黑人社区产生积极影响。
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