15 years ago, I volunteered to participate in a research study that involved a genetic test. When I arrived at the clinic to be tested, I was handed a questionnaire. One of the very first questions asked me to check a box for my race: White, black, Asian, or Native American.
15年前,我作为志愿者 参加了一个涉及 基因检测的学术研究。 当我到了医院,准备接受检测时, 有人给了我一份问卷。 最开头的几个问题中 有一个让我选择自己的种族: 白人、黑人、亚洲人还是印第安人。
I wasn't quite sure how to answer the question. Was it aimed at measuring the diversity of research participants' social backgrounds? In that case, I would answer with my social identity, and check the box for "black." But what if the researchers were interested in investigating some association between ancestry and the risk for certain genetic traits? In that case, wouldn't they want to know something about my ancestry, which is just as much European as African? And how could they make scientific findings about my genes if I put down my social identity as a black woman? After all, I consider myself a black woman with a white father rather than a white woman with a black mother entirely for social reasons. Which racial identity I check has nothing to do with my genes. Well, despite the obvious importance of this question to the study's scientific validity, I was told, "Don't worry about it, just put down however you identify yourself." So I check "black," but I had no confidence in the results of a study that treated a critical variable so unscientifically.
我不是很确定如何回答这个问题。 它是为了衡量受试者的社会背景 多样化程度有多高吗? 这样的话,我就会写上我的社会身份, 在“黑人”那一栏里打个勾。 但是假如研究者感兴趣的是 调查血统和某些基因特质之间的关系呢? 那样的话,他们大概就想知道我的血统, 也就是欧洲和非洲血统了吧? 那么他们会对我的基因有怎样的研究结果, 如果我写上了"黑人女性"的社会身份? 毕竟,我把自己当成 一个有着白人父亲的黑人女性, 而不是当成 一个有着黑人母亲的白人女性。 这完全是因为社会原因。 我选择哪一个种族身份 与我的基因是毫无关联的。 好吧,虽然这个问题 明明对这个研究的科学有效性很重要, 但有人告诉我,“别在意这个, 你怎么看待自己,你就怎么选。” 所以我就填上了“黑人”, 但是我对这个研究的结果是没有信心的, 因为它以如此不严谨的方式 对待一个关键的变量。
That personal experience with the use of race in genetic testing got me thinking: Where else in medicine is race used to make false biological predictions?
这次把种族因素加入基因检测的个人经历 让我不禁思考起来: 医药领域还有没有其他地方利用 种族差异来做出错误的生物学推测结果?
Well, I found out that race runs deeply throughout all of medical practice. It shapes physicians' diagnoses, measurements, treatments, prescriptions, even the very definition of diseases. And the more I found out, the more disturbed I became.
我发现,种族问题在整个医药行业 都有很深的影响。 它会影响医生的诊断结果、 检测结果、医疗过程、 处方, 甚至连疾病的定义都有所不同。 当我发现得越多,我就变得越不安。
Sociologists like me have long explained that race is a social construction. When we identify people as black, white, Asian, Native American, Latina, we're referring to social groupings with made up demarcations that have changed over time and vary around the world. As a legal scholar, I've also studied how lawmakers, not biologists, have invented the legal definitions of races.
我们社会学家一直以来 都把种族解释为一种社会架构。 当我们把人们分为黑人、白人、亚洲人、 印第安人、拉丁美洲人, 我们指的是一种社会团体, 它们有划定的界限, 但也随时间推移而改变, 而且界限在世界各地有所不同。 作为一个法学学者,我同样研究了 立法者,而不是生物学家, 是如何发明出种族的法律定义的。
And it's not just the view of social scientists. You remember when the map of the human genome was unveiled at a White House ceremony in June 2000? President Bill Clinton famously declared, "I believe one of the great truths to emerge from this triumphant expedition inside the human genome is that in genetic terms, human beings, regardless of race, are more than 99.9 percent the same." And he might have added that that less than one percent of genetic difference doesn't fall into racial boxes.
这还不只是社会科学家的观点。 大家还记得人类基因组图 在2000年6月在白宫的一次典礼上 初次展出的时候吗? 比尔·克林顿总统的那句著名的声明, “我相信,从这次对 人类基因组的成功探索中 得出的一个伟大真理, 就是在基因的角度上, 全人类,不论种族的差异, 有超过99.9%是完全相同的。” 其实他本应该加一句, 那不到0.1%的基因组差异 并不属于种族的范畴。
Francis Collins, who led the Human Genome Project and now heads NIH, echoed President Clinton. "I am happy that today, the only race we're talking about is the human race."
弗朗西斯·柯林斯, 人类基因组计划的领导者, 现在是美国国家卫生研究院院长, 也附和了克林顿总统。 “我非常高兴, 我们今天讨论的唯一种族 是人类这个种族。”
Doctors are supposed to practice evidence-based medicine, and they're increasingly called to join the genomic revolution. But their habit of treating patients by race lags far behind.
医生们应该提供基于 客观事实的诊疗方案, 越来越多医生也加入了 基因组研究的革命。 但是他们依据种族差异 对待病人的坏习惯拖了后腿。
Take the estimate of glomerular filtration rate, or GFR. Doctors routinely interpret GFR, this important indicator of kidney function, by race. As you can see in this lab test, the exact same creatinine level, the concentration in the blood of the patient, automatically produces a different GFR estimate depending on whether or not the patient is African-American. Why?
举个例子, 肾小球滤过率,简称GFR。 医生们常常把GFR的数值, 这个反映肾功能的重要指标, 用种族加以解读。 正如你们在这次实验报告里看到的, 完全一样的肌酸酐水平, 也就是病人血液中肌酸酐的浓度, 会自动产生不同的GFR估计值, 取决于病人是否是非裔美国人。 为什么啊?
I've been told it's based on an assumption that African-Americans have more muscle mass than people of other races. But what sense does it make for a doctor to automatically assume I have more muscle mass than that female bodybuilder? Wouldn't it be far more accurate and evidence-based to determine the muscle mass of individual patients just by looking at them?
有人告诉过我,这是基于一种假设, 非裔美国人的肌肉总质量 比其他种族的人要多。 但是这又是什么道理? 一个医生自然而然地就假设 我比一个女健身爱好者有更多的肌肉? 要想以更准确、更基于客观事实的方式 来判断每个病人的肌肉质量, 直接看一眼不就可以了吗?
Well, doctors tell me they're using race as a shortcut. It's a crude but convenient proxy for more important factors, like muscle mass, enzyme level, genetic traits they just don't have time to look for. But race is a bad proxy. In many cases, race adds no relevant information at all. It's just a distraction. But race also tends to overwhelm the clinical measures. It blinds doctors to patients' symptoms, family illnesses, their history, their own illnesses they might have -- all more evidence-based than the patient's race. Race can't substitute for these important clinical measures without sacrificing patient well-being.
医生们告诉我,他们把种族当作一种捷径。 这是一个相对粗糙但很方便的替代方式, 它可以代表其它更重要的因素, 比如肌肉质量、 酶水平、基因特质, 而这些都是他们没时间去检测的。 但是种族是个很差的替代品。 在很多情况下,种族根本不能 提供任何相关的信息。 这只是个分散注意力的东西罢了。 但是种族倾向于取代临床检测的数据。 它让医生对病人的症状视而不见, 还包括家族疾病、 病人病史, 还有自身可能患有的疾病的问题—— 这些都比病人的种族要更加客观。 种族是不可以代替 这些重要的临床数据的, 否则牺牲的是病人的健康。
Doctors also tell me race is just one of many factors they take into account, but there are numerous medical tests, like the GFR, that use race categorically to treat black, white, Asian patients differently just because of their race.
医生同样告诉我,种族只是 他们考虑的许多因素中的一个, 但是仍有很多的医学检测, 正如GFR一样, 是利用种族作为分类标准, 以不同方式诊疗黑人、白人、亚洲病人, 唯独因为他们种族不同。
Race medicine also leaves patients of color especially vulnerable to harmful biases and stereotypes. Black and Latino patients are twice as likely to receive no pain medication as whites for the same painful long bone fractures because of stereotypes that black and brown people feel less pain, exaggerate their pain, and are predisposed to drug addiction.
基于种族的药物也让有色人种 特别容易受到 偏见与陈规陋习的伤害。 黑人和拉丁美洲病人, 不被给予止痛药物的几率是白人的两倍, 即便都要承受同样的长骨骨折的痛苦。 这都是因为一种成见, 认为黑人和棕色皮肤的人 痛感相对更弱, 而且会夸大自己的痛感, 或者是容易对药物产生依赖性。
The Food and Drug Administration has even approved a race-specific medicine. It's a pill called BiDil to treat heart failure in self-identified African-American patients. A cardiologist developed this drug without regard to race or genetics, but it became convenient for commercial reasons to market the drug to black patients. The FDA then allowed the company, the drug company, to test the efficacy in a clinical trial that only included African-American subjects. It speculated that race stood in as a proxy for some unknown genetic factor that affects heart disease or response to drugs. But think about the dangerous message it sent, that black people's bodies are so substandard, a drug tested in them is not guaranteed to work in other patients.
美国食品药监局甚至通过了 一种针对特定种族的药品。 它是一种叫做BiDil的胶囊, 专门治疗自我认定为非裔美国人 心脏衰竭的问题。 一位心脏学家开发出这种药品 是没有考虑种族和基因问题的, 但是从商业角度来看,这样做很方便, 可以更容易地把药品销售给黑人。 食品药监局后来又同意了 那个制药公司, 在临床试验中测试药品的功效, 但是受试对象只有非裔美国人。 根据实验结果推测, 种族可作为替代品 是因为存在某种未知的基因因素 会影响心脏疾病, 或者是让人对药品产生不同反应。 但是想想,这传递的是多么危险的信号: 黑人的身体标准是如此的低, 在他们身上测试过的药品 都不能保证能在其他人身上起作用。
In the end, the drug company's marketing scheme failed. For one thing, black patients were understandably wary of using a drug just for black people. One elderly black woman stood up in a community meeting and shouted, "Give me what the white people are taking!"
结果,那个制药公司的营销策略失败了。 原因就是,黑人们对 一种只有黑人能用的药品 是非常警惕的,这很容易理解。 有一位年长的黑人女性 在社区集会上站起来大喊, “把白人吃的药给我拿过来!”
(Laughter)
(笑声)
And if you find race-specific medicine surprising, wait until you learn that many doctors in the United States still use an updated version of a diagnostic tool that was developed by a physician during the slavery era, a diagnostic tool that is tightly linked to justifications for slavery.
如果你觉得针对种族的药品很令人惊讶, 那么你还要知道 美国有很多的医生 都仍在使用一种改进版的 诊断方法, 最早是由奴隶社会时期的 一位外科医生所发明的, 这种诊断方法跟奴役的合法化 有着非常紧密的联系。
Dr. Samuel Cartwright graduated from the University of Pennsylvania Medical School. He practiced in the Deep South before the Civil War, and he was a well-known expert on what was then called "Negro medicine." He promoted the racial concept of disease, that people of different races suffer from different diseases and experience common diseases differently. Cartwright argued in the 1850s that slavery was beneficial for black people for medical reasons. He claimed that because black people have lower lung capacity than whites, forced labor was good for them. He wrote in a medical journal, "It is the red vital blood sent to the brain that liberates their minds when under the white man's control, and it is the want of sufficiency of red vital blood that chains their minds to ignorance and barbarism when in freedom." To support this theory, Cartwright helped to perfect a medical device for measuring breathing called the spirometer to show the presumed deficiency in black people's lungs.
塞缪尔·卡特赖特医生毕业于 宾夕法尼亚大学医学院。 他在美国内战之前在美国东南部工作, 是当时称作“黑奴药品”领域的 一位著名专家。 他推广了疾病的种族概念, 声称不同的种族会遭受不同的疾病, 而且对普通疾病的感受也有所不同。 卡特赖特在19世纪50年代曾表示, 奴役对黑人来说其实是有益的, 这是有医学依据的。 他声称,因为黑人的肺活量低于白人, 所以强制劳动对他们有好处。 他在一本医学日志中写道, “当他们受白人奴役, 至关重要的新鲜血液流经大脑时, 他们的思想才能获得解放, 而当他们自由时, 大脑得不到充足的新鲜血液, 会让他们变得无知和野蛮。” 为了支持这个理论, 卡特赖特协助完善了 一个称为肺活量计的 用于监测呼吸的医学仪器, 试图展现黑人肺部所谓的“缺陷”。
Today, doctors still uphold Cartwright's claim the black people as a race have lower lung capacity than white people. Some even use a modern day spirometer that actually has a button labeled "race" so the machine adjusts the measurement for each patient according to his or her race. It's a well-known function called "correcting for race."
现在,医生们依然支持卡特赖特的理论, 认为黑人整个种族 都比白人肺活量更低。 有些人使用的一种现代的肺活量计, 仪器上竟然有一个标着“种族”的按钮, 让仪器根据每个病人的种族 来调整检测的结果。 这是个有名的功能,叫做“种族校正”。
The problem with race medicine extends far beyond misdiagnosing patients. Its focus on innate racial differences in disease diverts attention and resources from the social determinants that cause appalling racial gaps in health: lack of access to high-quality medical care; food deserts in poor neighborhoods; exposure to environmental toxins; high rates of incarceration; and experiencing the stress of racial discrimination.
种族药物的危害远不止对病人的误诊。 它对疾病先天性、种族性差异的强调, 使得对其他社会决定因素的 注意力和资源发生了转移, 而这些因素都 导致了种族间医疗水平的惊人差异: 高水平医疗的匮乏; 贫困社区的食物紧缺问题; 与环境中的毒素的接触; 极高的监禁率; 还有种族歧视的种种压力。
You see, race is not a biological category that naturally produces these health disparities because of genetic difference. Race is a social category that has staggering biological consequences, but because of the impact of social inequality on people's health. Yet race medicine pretends the answer to these gaps in health can be found in a race-specific pill. It's much easier and more lucrative to market a technological fix for these gaps in health than to deal with the structural inequities that produce them.
可以看到,种族不属于生物学分类, 它不会因为基因差异 自然地导致医疗水平的差异。 种族应该是一个社会学分类, 却在生物学领域产生了非常严重的后果, 社会不平等问题 会对民众健康造成直接冲击。 然而种族药品让我们误以为 这些健康差异问题 只需一粒指定种族的胶囊来解决。 更简单、更有利可图的方式 是把解决医疗差异的技术问题 通过市场营销来解决, 而不是对付真正产生差异的 社会架构不平等问题。
The reason I'm so passionate about ending race medicine isn't just because it's bad medicine. I'm also on this mission because the way doctors practice medicine continues to promote a false and toxic view of humanity. Despite the many visionary breakthroughs in medicine we've been learning about, there's a failure of imagination when it comes to race. Would you imagine with me, just a moment: What would happen if doctors stopped treating patients by race? Suppose they rejected an 18th-century classification system and incorporated instead the most advanced knowledge of human genetic diversity and unity, that human beings cannot be categorized into biological races? What if, instead of using race as a crude proxy for some more important factor, doctors actually investigated and addressed that more important factor? What if doctors joined the forefront of a movement to end the structural inequities caused by racism, not by genetic difference?
我如此热衷于禁止种族药物的工作, 绝不仅是因为它是一种不好的药物。 我执行这个使命 是因为医生们从事医药行业的方式, 一直在宣传一种错误、有害的人道观念。 除去我们所了解的 那么多富有远见的医药学突破, 在涉及种族问题的时候, 人们的想象力突然丧失了。 大家跟我一起想象一下: 如果医生不再依据种族来给病人看病, 会发生什么事呢? 假如,他们不再采用 一个18世纪的分类系统, 而是利用当今最先进的知识, 有关人类基因多样性和统一性的知识, 最终得出人类不能被 简单分类成生物学种族的结论? 假如,我们不再用种族来粗糙地替代 其它更为重要的因素, 而且医生也开始仔细检测和采纳 那些更为重要的因素,会怎么样呢? 又假如,医生们都加入了革命的前线, 去终结由种族歧视, 而非基因导致的 社会结构的不平等性,又会如何呢?
Race medicine is bad medicine, it's poor science and it's a false interpretation of humanity. It is more urgent than ever to finally abandon this backward legacy and to affirm our common humanity by ending the social inequalities that truly divide us.
种族药品是很拙劣的药品, 它是一种伪科学, 而且是对人道的一种错误解读。 迫在眉睫的是, 要彻底摒弃这些落后的历史遗留产物, 并且让我们的人道主义思想深深扎根, 打破人与人之间真正的壁垒—— 即社会的不平等现象。
Thank you.
谢谢。
(Applause)
(鼓掌)
Thank you. Thanks. Thank you.
谢谢大家。谢谢。 谢谢你们。