The problem with race-based medicine | Dorothy Roberts

Prevodilac: Ivana Krivokuća Lektor: Tijana Mihajlović

15 years ago, I volunteered to participate in a research study

Pre 15 godina sam učestvovala kao volonter u istraživanju

koje je obuhvatalo genetski test.

that involved a genetic test.

When I arrived at the clinic to be tested,

Kada sam stigla na kliniku da bi me testirali,

I was handed a questionnaire.

dali su mi upitnik.

Među prvim pitanjima bilo je zatraženo da naznačim svoju rasu:

One of the very first questions asked me to check a box for my race:

White, black, Asian, or Native American.

belac, crnac, Azijat ili Indijanac.

I wasn't quite sure how to answer the question.

Nisam baš bila sigurna kako da odgovorim na to pitanje.

Was it aimed at measuring the diversity

Da li je ono imalo za cilj da proceni raznovrsnost

of research participants' social backgrounds?

društvenog porekla učesnika u istraživanju?

In that case, I would answer with my social identity,

U tom slučaju, odgovorila bih u skladu sa svojim društvenim identitetom

and check the box for "black."

i štriklirala opciju za „crnac“.

But what if the researchers were interested in investigating

Međutim, šta ako je istraživače zanimalo da ispitaju

some association between ancestry and the risk for certain genetic traits?

povezanost između porodičnog porekla i rizika od određenih genetskih osobina?

In that case, wouldn't they want to know something about my ancestry,

U tom slučaju, zar ne bi želeli da znaju nešto o mom porodičnom poreklu,

which is just as much European as African?

koje je podjednako evropsko i afričko?

And how could they make scientific findings about my genes

Kako bi mogli da dođu do naučnih podataka o mojim genima

if I put down my social identity as a black woman?

ako bih označila svoj društveni identitet kao žena crne rase?

After all, I consider myself a black woman with a white father

Naposletku, smatram sebe pre crnom ženom sa belim ocem

rather than a white woman with a black mother

nego belom ženom sa crnom majkom

entirely for social reasons.

isključivo iz društvenih razloga.

Which racial identity I check

Koji rasni identitet označavam

has nothing to do with my genes.

nema nikakve veze sa mojim genima.

Well, despite the obvious importance of this question

Uprkos očiglednom značaju ovog pitanja

to the study's scientific validity,

za valjanost naučnog istraživanja,

I was told, "Don't worry about it,

rekli su mi: „Ne brini za to,

just put down however you identify yourself."

samo stavi ono sa čim se identifikuješ.“

So I check "black,"

Stoga sam štriklirala „crnac“,

but I had no confidence in the results of a study

ali nisam imala poverenje u rezultate istraživanja

that treated a critical variable so unscientifically.

koje se odnosilo prema kritičnoj varijabli na tako nenaučan način.

That personal experience with the use of race in genetic testing

To lično iskustvo korišćenja rase u genetskom testiranju

got me thinking:

navelo me je na razmišljanje

Where else in medicine is race used to make false biological predictions?

o tome gde je još u medicini rasa korišćena

da bi nastala pogrešna biološka predviđanja.

Well, I found out that race runs deeply throughout all of medical practice.

Pa, otkrila sam da pitanje rase ima duboke korene

u celokupnoj medicinskoj praksi.

It shapes physicians' diagnoses,

Ona oblikuje dijagnoze doktora,

measurements, treatments,

merenja, lečenje,

prescriptions,

propisivanje lekova,

even the very definition of diseases.

čak i samu definiciju bolesti.

And the more I found out, the more disturbed I became.

Što sam više otkrivala, utoliko sam bila više uznemirena.

Sociologists like me have long explained

Sociolozi kao što sam ja dugo su objašnjavali

that race is a social construction.

da je rasa društveni konstrukt.

When we identify people as black, white, Asian, Native American, Latina,

Kada označavamo ljude kao crnce, belce, Azijate, Indijance, Latinoamerikance,

we're referring to social groupings

mislimo na društvene grupacije

with made up demarcations that have changed over time

sa izmišljenim razgraničavanjima koja su se vremenom izmenila

and vary around the world.

i razlikuju se širom sveta.

As a legal scholar, I've also studied

Kao izučavalac prava, takođe sam proučavala

how lawmakers, not biologists,

kako su zakonodavci, a ne biolozi,

have invented the legal definitions of races.

izmislili pravne definicije rase.

And it's not just the view of social scientists.

A to nije samo gledište društvenih nauka.

You remember when the map of the human genome

Sećate se kada je mapa ljudskog genoma

was unveiled at a White House ceremony in June 2000?

predstavljena na ceremoniji u Beloj kući u junu 2000. godine?

President Bill Clinton famously declared,

Poznata je izjava predsednika Bila Klintona:

"I believe one of the great truths

„Smatram da je jedna od velikih istina

to emerge from this triumphant expedition

koja proističe iz ove pobedničke ekspedicije

inside the human genome

unutar ljudskog genoma da su, u genetskom smislu,

is that in genetic terms,

human beings, regardless of race,

ljudska bića, bez obzira na rasu,

are more than 99.9 percent the same."

više od 99,9 posto ista.“

And he might have added

Mogao je i dodati

that that less than one percent of genetic difference

da to manje od jednog procenta genetskih razlika

doesn't fall into racial boxes.

ne spada u kategoriju rase.

Francis Collins, who led the Human Genome Project

Fransis Kolins, koji je rukovodio Projektom ljudskog genoma,

a sada predvodi Nacionalne institute za zdravlje,

and now heads NIH,

echoed President Clinton.

ponovio je za predsednikom Klintonom:

"I am happy that today,

„Srećan sam jer je danas

the only race we're talking about is the human race."

jedina rasa o kojoj govorimo ljudska rasa.“

Doctors are supposed to practice evidence-based medicine,

Doktori bi trebalo da se bave medicinom zasnovanom na dokazima,

and they're increasingly called to join the genomic revolution.

a sve se više pozivaju da se pridruže genomskoj revoluciji,

But their habit of treating patients by race lags far behind.

ali njihova navika lečenja pacijenata prema rasi daleko zaostaje.

Take the estimate

Uzmite procenu

of glomerular filtration rate, or GFR.

brzine glomerularne filtracije, GFR.

Doctors routinely interpret GFR,

Doktori rutinski tumače GFR,

this important indicator of kidney function, by race.

taj važan pokazatelj funkcije bubrega, u skladu sa rasom.

As you can see in this lab test,

Kao što možete videti na ovom laboratorijskom testu,

the exact same creatinine level,

potpuno isti nivo kreatinina,

the concentration in the blood of the patient,

koncentracija u krvi pacijenta,

automatically produces a different GFR estimate

automatski proizvodi različitu procenu GFR

depending on whether or not the patient is African-American.

u zavisnosti od toga da li pacijent jeste ili nije Afroamerikanac.

Why?

Zašto?

I've been told it's based on an assumption

Rekli su mi da se to zasniva na pretpostavci

that African-Americans have more muscle mass

da Afroamerikanci imaju više mišićne mase

than people of other races.

nego ljudi drugih rasa,

But what sense does it make

ali kakvog smisla ima

for a doctor to automatically assume

da doktor automatski pretpostavi

I have more muscle mass than that female bodybuilder?

da imam više mišićne mase od neke tamo bodibilderke?

Wouldn't it be far more accurate and evidence-based

Zar ne bi bilo mnogo tačnije i zasnovano na dokazima

to determine the muscle mass of individual patients

odrediti mišićnu masu pojedinačnih pacijenata

just by looking at them?

jednostavno ih pogledavši?

Well, doctors tell me they're using race as a shortcut.

Pa, doktori mi kažu da koriste rasu kao kraći put.

It's a crude but convenient proxy

To je grubo, ali praktično pomoćno sredstvo

for more important factors, like muscle mass,

za važnije faktore kao što su mišića masa,

enzyme level, genetic traits

nivo enzima, genetske osobine

they just don't have time to look for.

za kojima nemaju vremena da tragaju.

But race is a bad proxy.

Međutim, rasa je loše pomoćno sredstvo.

In many cases, race adds no relevant information at all.

U mnogim slučajevima, rasa uopšte ne daje značajne informacije.

It's just a distraction.

Samo ometa pažnju.

But race also tends to overwhelm the clinical measures.

Rasa takođe ume da prevlada nad kliničkim merenjima.

It blinds doctors to patients' symptoms,

Učini doktora slepim za simptome pacijenta,

family illnesses,

porodične bolesti,

their history, their own illnesses they might have --

njihovu istoriju, bolesti koje možda imaju -

all more evidence-based than the patient's race.

sve što je utemeljenije na dokazima od pacijentove rase.

Race can't substitute for these important clinical measures

Rasa ne može zameniti te važne kliničke mere

without sacrificing patient well-being.

bez žrtvovanja pacijentove dobrobiti.

Doctors also tell me race is just one of many factors

Doktori mi takođe kažu da je rasa samo jedan od mnogo faktora

they take into account,

koje uzimaju u obzir,

but there are numerous medical tests,

ali postoje brojni medicinski testovi,

like the GFR,

poput GFR,

that use race categorically

koji kategorično koriste rasu

to treat black, white, Asian patients differently

da bi se različito odnosili prema belim, crnim i azijskim pacijentima

just because of their race.

samo zbog njihove rase.

Race medicine also leaves patients of color especially vulnerable

Rasna medicina takođe posebno čini obojene pacijente podložnima

to harmful biases and stereotypes.

štetnim predrasudama i stereotipima.

Black and Latino patients are twice as likely

Crni i latinoamerički pacijenti imaju dvostruko veću šansu

to receive no pain medication as whites

da ne dobiju lekove za bolove nego beli pacijenti

for the same painful long bone fractures

za iste bolne prelome dugih kostiju

because of stereotypes

zbog stereotipa

that black and brown people feel less pain,

da crni i braon ljudi manje osećaju bol,

exaggerate their pain,

preuveličavaju svoj bol

and are predisposed to drug addiction.

i imaju sklonost ka zavisnosti od droga.

The Food and Drug Administration has even approved a race-specific medicine.

Uprava za hranu i lekove je čak odobrila lek namenjen za određenu rasu.

It's a pill called BiDil

To je pilula pod nazivom „Bajdil“ za lečenje srčane insuficijencije

to treat heart failure in self-identified African-American patients.

kod pacijenata koji se identifikuju kao Afroamerikanci.

A cardiologist developed this drug without regard to race or genetics,

Kardiolog je stvorio ovaj lek nevezano za rasu ili genetiku,

but it became convenient

ali je postalo zgodno

for commercial reasons

iz komercijalnih razloga

to market the drug to black patients.

promovisati lek za pacijente crne rase.

The FDA then allowed

Zatim je Uprava za hranu i lekove dozvolila kompaniji za lekove

the company, the drug company,

to test the efficacy in a clinical trial

da proveri delotvornost u kliničkom ispitivanju

that only included African-American subjects.

koje je obuhvatalo samo afroameričke ispitanike.

It speculated

Imalo je za teoriju

that race stood in as a proxy for some unknown genetic factor

da rasa predstavlja posrednika za neki nepoznati genetski faktor

that affects heart disease

koji utiče na oboljenje srca

or response to drugs.

ili reakciju na lekove.

But think about the dangerous message it sent,

Međutim, pomislite kakvu opasnu poruku je ovo poslalo,

that black people's bodies are so substandard,

da su tela ljudi crne rase toliko ispod standarda

a drug tested in them

da za lek testiran na njima

is not guaranteed to work in other patients.

nije pouzdano da će delovati kod drugih pacijenata.

In the end, the drug company's marketing scheme failed.

Na kraju, marketinški plan kompanije lekova je propao.

For one thing, black patients were understandably wary

Kao prvo, pacijenti crne rase su bili razumljivo obazrivi

of using a drug just for black people.

kada je u pitanju korišćenje leka namenjenog samo za crnce.

One elderly black woman stood up in a community meeting and shouted,

Jedna starija crnkinja je ustala na jednom sastanku u zajednici i povikala:

"Give me what the white people are taking!"

„Daj mi šta belci uzimaju!“

(Laughter)

(Smeh)

And if you find race-specific medicine surprising,

Ako vas iznenađuje medicina zasnovana na rasi,

wait until you learn

čekajte dok ne čujete

that many doctors in the United States

da mnogi doktori u Sjedinjenim Državama

still use an updated version

još koriste modernizovanu verziju

of a diagnostic tool

dijagnostičkog instrumenta

that was developed by a physician during the slavery era,

koji je izumeo lekar tokom perioda robovlasništva,

a diagnostic tool that is tightly linked

dijagnostičkog instrumenta koji je usko povezan

to justifications for slavery.

sa opravdanjima za držanje pod ropstvom.

Dr. Samuel Cartwright graduated

Dr Semjuel Kartrajt je diplomirao

from the University of Pennsylvania Medical School.

na Medicinskoj školi Univerziteta u Pensilvaniji.

He practiced in the Deep South before the Civil War,

Bavio se medicinom na dubokom jugu pre Građanskog rata

and he was a well-known expert on what was then called "Negro medicine."

i bio je poznati stručnjak za ono što se zvalo „crnačkom medicinom“.

He promoted the racial concept of disease,

Promovisao je rasni koncept bolesti,

that people of different races suffer from different diseases

da ljudi različitih rasa pate od različitih bolesti

and experience common diseases differently.

i imaju različit doživljaj zajedničkih bolesti.

Cartwright argued in the 1850s

Kartrajt je tvrdio 1850-ih godina

that slavery was beneficial for black people

da je ropstvo korisno za ljude crne rase

for medical reasons.

iz medicinskih razloga.

He claimed that because black people have lower lung capacity than whites,

Tvrdio je da, zato što crnci imaju manji kapacitet pluća od belaca,

forced labor was good for them.

prinudni rad je dobar za njih.

He wrote in a medical journal,

Napisao je u medicinskom časopisu:

"It is the red vital blood sent to the brain

„Crvena vitalna krv koja se šalje u mozak

that liberates their minds when under the white man's control,

je ono što oslobađa njihov um kada su pod kontrolom belog čoveka,

and it is the want of sufficiency of red vital blood

a želja za potrebnom količinom crvene vitalne krvi

that chains their minds to ignorance and barbarism when in freedom."

je ono što im prikuje um za neznanje i varvarizam kada su na slobodi.“

To support this theory, Cartwright helped to perfect

Da bi potkrepio ovu teoriju, Kartrajt je potpomogao usavršavanje

a medical device for measuring breathing called the spirometer

medicinske naprave za merenje disanja zvane spirometar

to show the presumed deficiency in black people's lungs.

da bi pokazao pretpostavljeni nedostatak u plućima ljudi crne rase.

Today, doctors still uphold Cartwright's claim

Doktori danas i dalje podržavaju Kartrajtovu tvrdnju

the black people as a race

da crnci kao rasa

have lower lung capacity than white people.

imaju manji kapacitet pluća od belaca.

Some even use a modern day spirometer

Neki čak koriste i savremeni spirometar

that actually has a button labeled "race"

koji zapravo ima dugme za oznakom „rasa“,

so the machine adjusts the measurement

tako da mašina prilagodi merenje

for each patient according to his or her race.

svakome pacijentu prema njegovoj ili njenoj rasi.

It's a well-known function called "correcting for race."

To je poznata funkcija zvana „podešavanje prema rasi“.

The problem with race medicine extends far beyond misdiagnosing patients.

Problem rasne medicine daleko prevazilazi pogrešno dijagnostikovanje pacijenata.

Its focus on innate racial differences in disease

Njen fokus na urođenim rasnim razlikama kod bolesti

diverts attention and resources

skreće pažnju i resurse

from the social determinants

od društvenih odlučujućih faktora

that cause appalling racial gaps in health:

koji uzrokuju užasne rasne praznine u oblasti zdravstva:

lack of access to high-quality medical care;

nedostatak pristupa medicinskoj nezi visokog kvaliteta,

food deserts in poor neighborhoods;

nestašice hrane u siromašnim krajevima,

exposure to environmental toxins;

izloženost otrovnim supstancama u životnom okruženju,

high rates of incarceration;

visoka stopa hapšenja,

and experiencing the stress of racial discrimination.

kao i suočavanje sa stresom usled rasne diskriminacije.

You see, race is not a biological category

Vidite, rasa nije biološka kategorija

that naturally produces these health disparities

koja prirodno stvara ove zdravstvene nejednakosti

because of genetic difference.

zbog genetskih razlika.

Race is a social category

Rasa je društvena kategorija

that has staggering biological consequences,

koja ima zapanjujuće biološke posledice,

but because of the impact of social inequality on people's health.

ali zbog uticaja društvene nejednakosti na zdravlje ljudi.

Yet race medicine pretends the answer to these gaps in health

Ipak, rasna medicina se pretvara da se odgovor na ove praznine u zdravstvu

can be found in a race-specific pill.

može naći u piluli namenjenoj određenoj rasi.

It's much easier and more lucrative

Mnogo je lakše i isplativije

to market a technological fix

promovisati tehnološko brzo rešenje

for these gaps in health

za ove nedostatke u zdravstvu

than to deal with the structural inequities that produce them.

nego se baviti strukturalnim nepravdama koje ih proizvode.

The reason I'm so passionate about ending race medicine

Razlog zbog kojeg se tako vatreno zalažem za okončanje rasne medicine

isn't just because it's bad medicine.

nije samo zato što je to loša medicina.

I'm also on this mission

Takođe sam na ovoj misiji

because the way doctors practice medicine

jer način na koji se doktori bave medicinom

continues to promote a false and toxic view of humanity.

nastavlja da promoviše lažno i toksično sagledavanje čovečanstva.

Despite the many visionary breakthroughs in medicine we've been learning about,

Uprkos mnogim vizionarskim dostignućima u medicini o kojima saznajemo,

there's a failure of imagination

postoji nedostatak mašte

when it comes to race.

kada se radi o rasi.

Would you imagine with me, just a moment:

Da li biste zamislili sa mnom, samo na trenutak,

What would happen if doctors stopped treating patients by race?

šta bi bilo kada bi doktori prestali da leče pacijente prema rasi?

Suppose they rejected

Recimo da odbace

an 18th-century classification system

klasifikacioni sistem iz 18. veka

and incorporated instead the most advanced knowledge

i umesto toga usvoje najnaprednije znanje

of human genetic diversity and unity,

ljudske genetske različitosti i jedinstva,

that human beings cannot be categorized into biological races?

da se ljudska bića ne mogu svrstavati u kategorije bioloških rasa.

What if, instead of using race as a crude proxy

Šta ako bi, umesto korišćenja rase kao grubog pomoćnog sredstva

for some more important factor,

za dolaženje do nekog važnijeg faktora,

doctors actually investigated and addressed that more important factor?

doktori zapravo ispitali i bavili se tim važnijim faktorom?

What if doctors joined the forefront

Šta bi bilo kada bi se doktori priključili prvim redovima

of a movement to end the structural inequities

pokreta za okončanje strukturalnih nejednakosti

caused by racism,

prouzrokovanih rasizmom,

not by genetic difference?

a ne genetskim razlikama?

Race medicine is bad medicine,

Rasna medicina je loša medicina,

it's poor science

to je loša nauka

and it's a false interpretation of humanity.

i lažno predstavljanje ljudskog roda.

It is more urgent than ever

Hitnije je nego ikada

to finally abandon this backward legacy

da se konačno napusti ovo nazadno nasleđe

and to affirm our common humanity

i da potvrdimo našu zajedničku ljudskost

by ending the social inequalities that truly divide us.

okončanjem društvenih nejednakosti koje nas zaista razdvajaju.

Hvala.

Thank you.

(Applause)

(Aplauz)

Thank you. Thanks.

Hvala. Hvala vam.

Hvala.

Thank you.