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.
Pre 15 godina sam učestvovala kao volonter u istraživanju koje je obuhvatalo genetski test. Kada sam stigla na kliniku da bi me testirali, dali su mi upitnik. Među prvim pitanjima bilo je zatraženo da naznačim svoju rasu: belac, crnac, Azijat ili Indijanac.
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.
Nisam baš bila sigurna kako da odgovorim na to pitanje. Da li je ono imalo za cilj da proceni raznovrsnost društvenog porekla učesnika u istraživanju? U tom slučaju, odgovorila bih u skladu sa svojim društvenim identitetom i štriklirala opciju za „crnac“. Međutim, šta ako je istraživače zanimalo da ispitaju povezanost između porodičnog porekla i rizika od određenih genetskih osobina? U tom slučaju, zar ne bi želeli da znaju nešto o mom porodičnom poreklu, koje je podjednako evropsko i afričko? Kako bi mogli da dođu do naučnih podataka o mojim genima ako bih označila svoj društveni identitet kao žena crne rase? Naposletku, smatram sebe pre crnom ženom sa belim ocem nego belom ženom sa crnom majkom isključivo iz društvenih razloga. Koji rasni identitet označavam nema nikakve veze sa mojim genima. Uprkos očiglednom značaju ovog pitanja za valjanost naučnog istraživanja, rekli su mi: „Ne brini za to, samo stavi ono sa čim se identifikuješ.“ Stoga sam štriklirala „crnac“, ali nisam imala poverenje u rezultate istraživanja koje se odnosilo prema kritičnoj varijabli na tako nenaučan način.
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?
To lično iskustvo korišćenja rase u genetskom testiranju navelo me je na razmišljanje o tome gde je još u medicini rasa korišćena
Well, I found out that race runs deeply throughout all of medical practice.
da bi nastala pogrešna biološka predviđanja.
It shapes physicians' diagnoses, measurements, treatments, prescriptions, even the very definition of diseases. And the more I found out, the more disturbed I became.
Pa, otkrila sam da pitanje rase ima duboke korene u celokupnoj medicinskoj praksi. Ona oblikuje dijagnoze doktora, merenja, lečenje, propisivanje lekova, čak i samu definiciju bolesti. Što sam više otkrivala, utoliko sam bila više uznemirena.
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.
Sociolozi kao što sam ja dugo su objašnjavali da je rasa društveni konstrukt. Kada označavamo ljude kao crnce, belce, Azijate, Indijance, Latinoamerikance, mislimo na društvene grupacije sa izmišljenim razgraničavanjima koja su se vremenom izmenila i razlikuju se širom sveta. Kao izučavalac prava, takođe sam proučavala kako su zakonodavci, a ne biolozi, izmislili pravne definicije rase.
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.
A to nije samo gledište društvenih nauka. Sećate se kada je mapa ljudskog genoma predstavljena na ceremoniji u Beloj kući u junu 2000. godine? Poznata je izjava predsednika Bila Klintona: „Smatram da je jedna od velikih istina koja proističe iz ove pobedničke ekspedicije unutar ljudskog genoma da su, u genetskom smislu, ljudska bića, bez obzira na rasu, više od 99,9 posto ista.“ Mogao je i dodati da to manje od jednog procenta genetskih razlika ne spada u kategoriju rase.
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."
Fransis Kolins, koji je rukovodio Projektom ljudskog genoma, a sada predvodi Nacionalne institute za zdravlje, ponovio je za predsednikom Klintonom: „Srećan sam jer je danas jedina rasa o kojoj govorimo ljudska rasa.“
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.
Doktori bi trebalo da se bave medicinom zasnovanom na dokazima, a sve se više pozivaju da se pridruže genomskoj revoluciji, ali njihova navika lečenja pacijenata prema rasi daleko zaostaje.
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?
Uzmite procenu brzine glomerularne filtracije, GFR. Doktori rutinski tumače GFR, taj važan pokazatelj funkcije bubrega, u skladu sa rasom. Kao što možete videti na ovom laboratorijskom testu, potpuno isti nivo kreatinina, koncentracija u krvi pacijenta, automatski proizvodi različitu procenu GFR u zavisnosti od toga da li pacijent jeste ili nije Afroamerikanac. Zašto?
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?
Rekli su mi da se to zasniva na pretpostavci da Afroamerikanci imaju više mišićne mase nego ljudi drugih rasa, ali kakvog smisla ima da doktor automatski pretpostavi da imam više mišićne mase od neke tamo bodibilderke? Zar ne bi bilo mnogo tačnije i zasnovano na dokazima odrediti mišićnu masu pojedinačnih pacijenata jednostavno ih pogledavši?
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.
Pa, doktori mi kažu da koriste rasu kao kraći put. To je grubo, ali praktično pomoćno sredstvo za važnije faktore kao što su mišića masa, nivo enzima, genetske osobine za kojima nemaju vremena da tragaju. Međutim, rasa je loše pomoćno sredstvo. U mnogim slučajevima, rasa uopšte ne daje značajne informacije. Samo ometa pažnju. Rasa takođe ume da prevlada nad kliničkim merenjima. Učini doktora slepim za simptome pacijenta, porodične bolesti, njihovu istoriju, bolesti koje možda imaju - sve što je utemeljenije na dokazima od pacijentove rase. Rasa ne može zameniti te važne kliničke mere bez žrtvovanja pacijentove dobrobiti.
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.
Doktori mi takođe kažu da je rasa samo jedan od mnogo faktora koje uzimaju u obzir, ali postoje brojni medicinski testovi, poput GFR, koji kategorično koriste rasu da bi se različito odnosili prema belim, crnim i azijskim pacijentima samo zbog njihove rase.
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.
Rasna medicina takođe posebno čini obojene pacijente podložnima štetnim predrasudama i stereotipima. Crni i latinoamerički pacijenti imaju dvostruko veću šansu da ne dobiju lekove za bolove nego beli pacijenti za iste bolne prelome dugih kostiju zbog stereotipa da crni i braon ljudi manje osećaju bol, preuveličavaju svoj bol i imaju sklonost ka zavisnosti od droga.
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.
Uprava za hranu i lekove je čak odobrila lek namenjen za određenu rasu. To je pilula pod nazivom „Bajdil“ za lečenje srčane insuficijencije kod pacijenata koji se identifikuju kao Afroamerikanci. Kardiolog je stvorio ovaj lek nevezano za rasu ili genetiku, ali je postalo zgodno iz komercijalnih razloga promovisati lek za pacijente crne rase. Zatim je Uprava za hranu i lekove dozvolila kompaniji za lekove da proveri delotvornost u kliničkom ispitivanju koje je obuhvatalo samo afroameričke ispitanike. Imalo je za teoriju da rasa predstavlja posrednika za neki nepoznati genetski faktor koji utiče na oboljenje srca ili reakciju na lekove. Međutim, pomislite kakvu opasnu poruku je ovo poslalo, da su tela ljudi crne rase toliko ispod standarda da za lek testiran na njima nije pouzdano da će delovati kod drugih pacijenata.
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!"
Na kraju, marketinški plan kompanije lekova je propao. Kao prvo, pacijenti crne rase su bili razumljivo obazrivi kada je u pitanju korišćenje leka namenjenog samo za crnce. Jedna starija crnkinja je ustala na jednom sastanku u zajednici i povikala: „Daj mi šta belci uzimaju!“
(Laughter)
(Smeh)
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.
Ako vas iznenađuje medicina zasnovana na rasi, čekajte dok ne čujete da mnogi doktori u Sjedinjenim Državama još koriste modernizovanu verziju dijagnostičkog instrumenta koji je izumeo lekar tokom perioda robovlasništva, dijagnostičkog instrumenta koji je usko povezan sa opravdanjima za držanje pod ropstvom.
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.
Dr Semjuel Kartrajt je diplomirao na Medicinskoj školi Univerziteta u Pensilvaniji. Bavio se medicinom na dubokom jugu pre Građanskog rata i bio je poznati stručnjak za ono što se zvalo „crnačkom medicinom“. Promovisao je rasni koncept bolesti, da ljudi različitih rasa pate od različitih bolesti i imaju različit doživljaj zajedničkih bolesti. Kartrajt je tvrdio 1850-ih godina da je ropstvo korisno za ljude crne rase iz medicinskih razloga. Tvrdio je da, zato što crnci imaju manji kapacitet pluća od belaca, prinudni rad je dobar za njih. Napisao je u medicinskom časopisu: „Crvena vitalna krv koja se šalje u mozak je ono što oslobađa njihov um kada su pod kontrolom belog čoveka, a želja za potrebnom količinom crvene vitalne krvi je ono što im prikuje um za neznanje i varvarizam kada su na slobodi.“ Da bi potkrepio ovu teoriju, Kartrajt je potpomogao usavršavanje medicinske naprave za merenje disanja zvane spirometar da bi pokazao pretpostavljeni nedostatak u plućima ljudi crne rase.
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."
Doktori danas i dalje podržavaju Kartrajtovu tvrdnju da crnci kao rasa imaju manji kapacitet pluća od belaca. Neki čak koriste i savremeni spirometar koji zapravo ima dugme za oznakom „rasa“, tako da mašina prilagodi merenje svakome pacijentu prema njegovoj ili njenoj rasi. To je poznata funkcija zvana „podešavanje prema rasi“.
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.
Problem rasne medicine daleko prevazilazi pogrešno dijagnostikovanje pacijenata. Njen fokus na urođenim rasnim razlikama kod bolesti skreće pažnju i resurse od društvenih odlučujućih faktora koji uzrokuju užasne rasne praznine u oblasti zdravstva: nedostatak pristupa medicinskoj nezi visokog kvaliteta, nestašice hrane u siromašnim krajevima, izloženost otrovnim supstancama u životnom okruženju, visoka stopa hapšenja, kao i suočavanje sa stresom usled rasne diskriminacije.
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.
Vidite, rasa nije biološka kategorija koja prirodno stvara ove zdravstvene nejednakosti zbog genetskih razlika. Rasa je društvena kategorija koja ima zapanjujuće biološke posledice, ali zbog uticaja društvene nejednakosti na zdravlje ljudi. Ipak, rasna medicina se pretvara da se odgovor na ove praznine u zdravstvu može naći u piluli namenjenoj određenoj rasi. Mnogo je lakše i isplativije promovisati tehnološko brzo rešenje za ove nedostatke u zdravstvu nego se baviti strukturalnim nepravdama koje ih proizvode.
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?
Razlog zbog kojeg se tako vatreno zalažem za okončanje rasne medicine nije samo zato što je to loša medicina. Takođe sam na ovoj misiji jer način na koji se doktori bave medicinom nastavlja da promoviše lažno i toksično sagledavanje čovečanstva. Uprkos mnogim vizionarskim dostignućima u medicini o kojima saznajemo, postoji nedostatak mašte kada se radi o rasi. Da li biste zamislili sa mnom, samo na trenutak, šta bi bilo kada bi doktori prestali da leče pacijente prema rasi? Recimo da odbace klasifikacioni sistem iz 18. veka i umesto toga usvoje najnaprednije znanje ljudske genetske različitosti i jedinstva, da se ljudska bića ne mogu svrstavati u kategorije bioloških rasa. Šta ako bi, umesto korišćenja rase kao grubog pomoćnog sredstva za dolaženje do nekog važnijeg faktora, doktori zapravo ispitali i bavili se tim važnijim faktorom? Šta bi bilo kada bi se doktori priključili prvim redovima pokreta za okončanje strukturalnih nejednakosti prouzrokovanih rasizmom, a ne genetskim razlikama?
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.
Rasna medicina je loša medicina, to je loša nauka i lažno predstavljanje ljudskog roda. Hitnije je nego ikada da se konačno napusti ovo nazadno nasleđe i da potvrdimo našu zajedničku ljudskost okončanjem društvenih nejednakosti koje nas zaista razdvajaju.
Thank you.
Hvala.
(Applause)
(Aplauz)
Thank you. Thanks. Thank you.
Hvala. Hvala vam. Hvala.