Genetic Researchers Fight to Include Ignored Ethnic Groups
America’s Wire, News Report, Kenneth J. Cooper, Posted: Jan 28, 2011
Stanford University geneticist Carlos D. Bustamante, 36, is leading an effort to include more Hispanics and African-Americans in genetic research critical to determining root causes of many diseases. He has been critical of research that has often focused largely on white populations.
The Venezuela-born geneticist – a recipient of a MacArthur Foundation “genius award” — has helped expand testing in the global study called the 1,000 Genomes Project. Launched in 2008, the study is mapping genes of at least 1,000 people worldwide. An international group of scientists is taking DNA samples, analyzing them and sharing the findings.
The study started with samples taken in Europe, Asia, Africa and the United States. But Bustamante recognized that Latin America was missing from this project, which is coordinated by the National Institutes of Health (NIH). He successfully pressed for adding Colombia, Peru, Puerto Rico and Barbados.
“We’re one of the groups that have really been very passionate about studying African-American populations and studying Hispanic-Latino populations, so that they get brought into the fold of medical genetics research,” said Bustamante.
Already, the 1,000 Genomes project research has found that small genetic variations help to explain why some groups are more at risk for cancer and diabetes.
400 Studies Had 90 Percent Europeans
Scrutiny of past studies shows that lack of diversity in research has long occurred. A 2009 review of nearly 400 studies worldwide found that more than 90 percent examined only people of European descent. Duke University scientists counted 26 studies including Asians, three with Hispanics, two with Native Americans and none involving African-Americans. Another 11 studies tested people from a mix of racial and ethnic backgrounds.
“NIH has a lot of responsibility” for the racial-ethnic imbalance, said Esteban Burchard, a Mexican American geneticist at the University of California, San Francisco. “They’re happy to take our tax dollars, but they don’t distribute them equally.”
NIH has acknowledged the imbalance despite a policy adopted in 1985 encouraging inclusion of minorities in studies it funds. Since that year, federal law has mandated that all NIH-funded research include minorities. Besides NIH, the 1,000 Genomes Project has funds from a private British trust and two genetics institutes in China.
“I don’t think enough of them have been studied,” said Charles Rotimi, director of NIH’s Center for Research on Genomics and Global Health. “There needs to be a commitment from the various institutes to fund these large-scale studies.”
Jean McEwen, a program director at the National Human Genome Research Institute, said the five-year, $120 million 1,000 Genomes study started as a pilot project. She added that it took time to secure government approval in some countries or, in others, to identify scientific partners. Bustamante did that for the South American and Caribbean countries, she noted.
Resistance to Change
McEwen said the initial omission of countries in those regions is “just a practical matter.” But Bustamante said he encountered resistance to broadening the 1,000 Genomes project.
Burchard praised Bustamante for “really pushing the field, bending the steel, to look at other populations.” Bustamante has succeeded, Burchard said, because he has leverage as a respected professor at Stanford and, previously, Cornell University, with three degrees from Harvard University.
Beyond 1,000 Genomes, Rotimi said NIH has funded few genetic studies of minorities for many reasons. He and McEwen, who does community outreach for 1,000 Genomes, cite difficulty recruiting minorities, who tend to be skeptical of medical research because of past abuses, such as the notorious Tuskegee experiment of African-American men suffering from syphilis untreated from 1932 to 1972.
Rotimi emphasized, though, that the small number of minority geneticists present “perhaps one of the biggest problems.” Researchers, he noted, tend to “navigate towards their own communities.”
Furthermore, Rotimi continued, historically black and Hispanic-serving colleges often lack adequate labs and other equipment, enabling their professors to make grant applications competitive with those from researchers at such institutions as Harvard and Johns Hopkins University, leading recipients of NIH funds.
Bustamante objected: “One of the reasons that researchers say they study white populations is that they’re easier to study, they’re more homogeneous, blah-blah-blah. But it’s really that they haven’t really done enough to engage minority populations.”
Social, Environmental Factors a “Huge Issue”
In general, studies only examining genetic factors have critics.
Prominent among them is Troy Duster, a professor of sociology and bioethics at New York University, who stresses the need for scientists also to include environmental and social factors, such as diet, exercise and stress caused by perceived racism.
“I think this is a huge issue,” Duster said. “You can’t just do one kind of study.”
He added, “My objection to those kinds of studies is that they are making it sound as if race is understood to be a biological phenomenon.”
The idea that race has a biological aspect may comfort those who believe that the races are so different they should live apart. For instance, in 2007, David Duke, a former national director of the Knights of the Ku Klux Klan and former Louisiana state representative, praised Burchard’s research.
“I do think your work and others, who show real biological differences between races, is important,” Duke e-mailed Burchard in an message Duke posted on his website. “You show that race is truly real, not a societal construct or some sort of conspiracy theory.”
Burchard shrugs off Duke’s embrace.
“Regardless of what you develop, whether it’s nuclear energy or biologic information, you’re always going to have some perverted individuals trying to manipulate it to their gain,” he said. “But that doesn’t mean that we should stop doing science.”
Moreover, Burchard said, “Rather than trying to be politically correct and burying our heads in the sand, we should be looking at these differences and trying to use these differences to untangle disease.”
This article is adapted from a longer version posted on America’s Wire.