`A sort of scientific malpractice'

Genetics: Scientists are cautioning doctors against the use of race as a guide in diagnosis, treatment and research.

October 11, 2004|By Frank D. Roylance | Frank D. Roylance,SUN STAFF

A pharmaceutical maker called NitroMed is testing a drug it hopes to market as a treatment for heart failure in African-Americans.

Pfizer, a drug industry giant, is holding a national series of health awareness meetings "to inform and educate African-American women about the diseases and conditions for which they're at risk."

The Food and Drug Administration wants drug researchers to take pains to include racial minorities in their clinical trials.

Although these might all be viewed as good examples of smart, practical medicine, biologists and anthropologists are increasingly warning the medical community against using race as a guide in diagnosis, treatment and research.

It's "a sort of scientific malpractice," said Alan H. Goodman, president-elect of the American Anthropological Association, and it "may cost real lives."

Goodman and colleagues argue that advances in genetics have turned old ideas about human biological differences on their head. New research is showing that genetically, at least, humans are virtually identical. And the small genetic variance that does exist has little in common with Americans' traditional notions of race.

Dr. Michael J. Bamshad, a pediatrics professor at the University of Utah School of Medicine, says doctors find the debate frustrating.

"They hear claims from both extremes: that there's no biological basis for race, or that biology clearly exists and it's responsible for differences in disease," he said. "It's unclear to them if they should change the way they practice, and if so, how."

The intersection of race and genetics in medicine also raises deep suspicions among some African-Americans.

They still have bitter memories of the notorious Tuskegee syphilis study, in which the U.S. Public Health Service let 399 infected black men go untreated for 40 years -- long after effective medicines for syphilis had been developed.

They also remember the coerced sterilization of blacks and others during the American eugenics movement of the 20th century, which tried to eliminate the "unfit" from the reproductive population. At a few institutions, sterilization continued into the 1970s.

"I have not seen any science that has helped people of color, genetically speaking," said Christopher Emanuel, a government employee who challenged scientists last week at a conference in Washington sponsored by the Johns Hopkins University's Genetics and Public Policy Center and the Congressional Black Caucus.

There have been abuses, conceded Dr. Kwaku Ohene-Frempong, director of the Comprehensive Sickle Cell Center at Children's Hospital in Philadelphia.

For example, blacks who tested positive in early mass screenings for the sickle cell genetic trait suffered job discrimination. But he said that has changed with better information, and sickle cell testing has saved thousands of young lives.

"I don't think we can just outright reject science or the benefits of genetics," Ohene-Frempong said. "What everybody hopes is that the good will of people will win over the bad tendencies we have so that we will apply science to do good."

Others acknowledged the value of genetics in screening for disease and exonerating innocent people charged with serious crimes. But some worried that dividing research and clinical care along racial lines will create or reinforce existing disparities.

Forensic science

Their concern extends beyond medicine to forensics, such as the use of DNA evidence to identify the likely "race" of a fugitive criminal.

"Despite all the developments in science," the discredited 18th-century notion that humans are divided into four or five races is "alive and well in forensic science," New York University sociologist Troy Duster told the Washington gathering.

Medicine has been slow to acknowledge the results of continuing genetic research, critics say -- although often with the best of intentions.

In a 2002 article in The New York Times, Dr. Sally Satel acknowledged, "I am a racially profiling doctor. ... I always take note of my patient's race. So do many of my colleagues. We do it because certain diseases and treatment responses cluster by ethnicity. Recognizing these patterns can help us diagnose disease more efficiently and prescribe medications more effectively."

But Goodman, an anthropologist at Hampshire College in Amherst, Mass., disagrees. "She's entirely wrong," he said.

"Every disease known has some variation in frequency and prevalence by race," he said. But with no firm basis in biology, race isn't a precise indicator of any patient's genetic heritage, and doctors shouldn't rely on it.

"If you see the world as flat, it may in fact get you from one block to the other," Goodman said. "But it's not really how the world is shaped."

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