TED演讲:人类基因研究需要更多样化(2)(在线收听) |
Now you don't need a PhD to see that that leaves four percent for the rest of diversity. 你不需要一个博士学位都能发现其他的种族只有4%。 And in my own searching, I've discovered that far less than one percent have actually focused on indigenous communities, like myself. 在我自己的研究里,我发现远不到1%的研究是专注于像我一样的土著居民。 So that begs the question: Who is the Human Genome Project actually for? 所以我要问一个问题:人类基因组计划究竟是为了谁? Just like we have different colored eyes and hair, we metabolize drugs differently based on the variation in our genomes. 就像我们有着不同颜色的眼睛和头发一样,根据我们的基因组,我们对药物的新陈代谢不同。 So how many of you would be shocked to learn that 95 percent of clinical trials 所以我不知道你们会多惊讶95%的医疗临床试验 have also exclusively featured individuals of European ancestry? 也是专门为欧洲血统的人。 This bias and systematic lack of engagement of indigenous people in both clinical trials and genome studies 这一不公平和缺少对土著居民的系统研究,在医疗临床和基因研究领域 is partially the result of a history of distrust. 都是造成历史上种族不信任的部分原因。 For example, in 1989, researchers from Arizona State University obtained blood samples from Arizona's Havasupai tribe, 举个例子,1989年,亚利桑那州州立大学的研究者们在亚利桑那州哈瓦苏部落采集了血样, promising to alleviate the burden of type 2 diabetes that was plaguing their community, 保证减轻在社区横行的2型糖尿病, only to turn around and use those exact same samples -- without the Havasupai's consent 但是却在没有哈瓦苏人的同意下,用这些血样 to study rates of schizophrenia, inbreeding, and challenge the Havasupai's origin story. 来研究精神分裂症和近亲繁殖的概率,并且挑战哈瓦苏部落的起源。 When the Havasupai found out, they sued successfully for $700,000, and they banned ASU from conducting research on their reservation. 当哈瓦苏人发现的时候,他们成功起诉,获得了70万美元的罚款,还禁止亚利桑那州立大学对其部落的研究。 This culminated in a sort of domino effect with local tribes in the Southwest 这件事在美国西南造成了多米诺效应, including the Navajo Nation, one of the largest tribes in the country -- putting a moratorium on genetic research. 包括美国最大的部落:纳瓦霍族,他们叫停了一个基因的研究。 |
原文地址:http://www.tingroom.com/lesson/TEDyj/kxp/536816.html |