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Researching DNA behind race and disease prompts suspicion in black community

by Kristen Minogue
Jan 15, 2009

More than 40 percent of African-Americans fear genetic research into why certain diseases are more prevalent among minorities could raise their insurance premiums, and close to a third think it could lead to increased discrimination and reinforce racism, according to a new study.

In contrast, only 30 percent of white participants thought the cost of insurance could rise as a result. A scant 6 percent of whites thought minorities could be used as “guinea pigs” in such research, compared to 27 percent of blacks.

“There's a higher level of distrust, a lot more concerns about misuse or violations of privacy and confidentiality, misuse of information generally in medical research, on the part of African-Americans,” said Gail Henderson, co-author of the study that appeared in the December issue of the Journal of General Internal Medicine. Henderson researches social medicine at the University of North Carolina at Chapel Hill.

That mistrust isn’t groundless: In 1947 the United States government denied treatment to almost four hundred African-American men suffering from syphilis in order to study the natural progress of the disease as part of the Tuskegee experiment. President Clinton apologized for the government's inaction.

Researchers from the University of North Carolina and Emory University in Atlanta conducted phone interviews with 153 African-American and 648 white participants to ask them what they thought about using genetics to explain why certain diseases affect some racial groups more than others.

While participants tended to respond positively to open-ended questions about the research, the differences became more pronounced when the researchers outlined some specific negatives that could result.

“When you say, do you think minorities could be used as guinea pigs in this kind of work, as one example of the statements we asked subjects to respond to, it triggers something,” said Henderson, “and people are more willing to express an agreement with that than just off the top of their head say something.”

Vincent Freeman, an epidemiologist at the University of Illinois at Chicago, said he thought the study’s main flaw was its age bias: the average participant was 64 years old. All were at least 40, meaning all would have been alive when a journalist exposed the Tuskegee experiment in 1972.

“Because the group is an older group in general, they may have a different perspective on this than say if you ask someone who’s in their twenties,” he said.

Freeman has studied the health disparity separating African-Americans and other minorities from whites extensively, especially how it plays out in prostate cancer, a disease that disproportionately affects African-Americans. 

He said blacks are almost twice as likely to contract and die from prostate cancer as whites. But he is skeptical of using genetics alone to explain the disparity.

“So far we have not found a ‘prostate cancer gene’ that could explain the occurrence of a significant portion, say 10 to 15 percent, of all prostate cancers diagnosed in the United States,” he said.

Freeman said genetic testing for any disease should be part of a portfolio of services that includes blood pressure, cholesterol and other health tests.

In the meantime, he said doctors should offer black men a digital rectal exam to help detect the cancer at age 45, five years earlier than the American Cancer Society recommends for the general male population in the United States.

Neither Henderson nor Freeman is blind to the danger that genetic research into race could be misused. 

Freeman said the racial disparity in health care is a complicated issue, and it's tempting to look for simple explanations. “They are certainly more convenient than universal access to high-quality health care and minimizing unhealthy lifestyle practices.”

Henderson expressed hope that the Genetic Information Nondiscrimination Act, which forbids employers and health insurance companies from discriminating against clients based on their DNA, will offers some protection when it takes effect for insurance companies in May.

Freeman said in spite of the law's advances, he still feels concerned.

“I am troubled by the fact that it does not prevent genetic discrimination against people seeking life insurance, or disability and long-term care insurance,” he said.

Many scientists say geography is a much stronger way to predict genetic differences than race, and even then the differences are minimal: a mere fraction of a fraction of a percent.

And applying those differences to race – a largely social phenomenon – is problematic.

“There's no question about really significant differences between people whose ancestors grew up in Asia and whose ancestors are from Africa or from Northern Europe,” said Henderson. “But to translate that into trying to gage differences between African-Americans and Caucasians in the U.S., when what the definition of an African-American is, is social, not biological, that's where you really get into trouble.”