Government’s New Online Cancer Risk Tool Omits Minorities

By RONI CARYN RABIN
Published: February 12, 2009
A new interactive online tool can help older Americans assess their risk for developing colon cancer. The catch is that it only works for whites.
That’s too bad, since blacks are at higher risk than whites for colorectal cancer, developing it and dying of it at higher rates, and recent reports suggest the racial gap is widening.
The new screening tool, developed by the National Cancer Institute and available at www.cancer.gov/colorectalcancerrisk, asks roughly 20 questions, the first two about race and ethnic background.
If the user answers “Hispanic” or “Black or African-American,” a box of red text pops up that says, “At this time the risk calculations and results provided by this tool are only accurate for non-Hispanic white men and women ages 50 to 85.” The text refers readers to another Web site for more information.
“I’m frankly a bit taken aback,” said Gail Christopher, vice president for programs at the W. K. Kellogg Foundation, after being referred to the site by a reporter. “This is not acceptable. N.C.I. can do better.”
N.C.I. officials said they are modifying the risk assessment tool so it will be applicable to blacks, Hispanics and Asians, but said the data they used to test the model’s precision were drawn from studies with mostly older white participants. As a result, they weren’t able to estimate relative risks for people from other racial and ethnic groups, or for those younger than 50.
“It will be more difficult to validate this model in other ethnicities, because data is more difficult to come by,” said Dr. Andrew Freedman, the N.C.I. epidemiologist who authored the risk assessment tool.
But Dr. Christopher said that even if there were insufficient data to develop a tool applicable to all ethnic and racial groups based on existing information, N.C.I. officials “should have at least been more forthright in the opening paragraph and acknowledged the racial disparity with this disease up front, and offered some advice to people who face a greater risk, to perhaps seek out a different form of examination.”
"This was a major faux pas," she added.
After questions of race and ethnic background are settled, the risk assessment tool turns to questions about lifestyle, including how often one gets physical exercise and how many fruits and vegetables one eats (not counting French fries). There are questions about how often one takes aspirin or other nonsteroidal anti-inflammatory drugs (with the exception of Tylenol, they reduce the risk of colon cancer), whether there’s any colon cancer in the family, and whether one has been in for a colonoscopy or sigmoidoscopy, which reduces risk.
Men are asked if they smoke, since smoking increases their risk. Women are asked whether they still menstruate or take estrogen, since estrogen is associated with a lower risk.
The risk assessment tool isn’t appropriate for people with Crohn’s disease and some other inherited conditions. A good explanation of the risk factors and protective behaviors can be found at http://www.cancer.gov/colorectalcancerrisk/about-tool.aspx.