FeaturesDec/Jan 2010 Issue

Searching for Answers - Celiac and Gluten Sensitivities

Confidentiality Concerns

Abby Williamson, right, and her younger sisters were each screened for celiac disease. Only Abby’s blood work was positive.

Unlike other genetic tests, privacy isn’t a big issue for celiac testing.

“We didn’t really worry about the implications,” Williamson says.

She’s not alone. Shilson says most patients at the University of Chicago Celiac Disease Center aren’t terribly concerned. “The genetic test for celiac disease is different from many other genetic tests,” says Fasano. “A positive result doesn’t imply much. It has little predictive value on the lifetime risk of developing celiac disease.”

What’s more, a recent federal law helps address concerns about the misuse of genetic information. The Genetic Information Nondiscrimination Act of 2008 (GINA), protects Americans from being treated unfairly due to DNA and health issues. The new law, which went into effect in November 2009, prevents discrimination from health insurers and employers. Its protection does not extend, however, to life insurance, disability insurance and long-term care insurance.

Shilson says that patients concerned about privacy and potential misuse of information often elect to circumvent insurance companies by paying for genetic testing out-of-pocket.

Next: Your Genes, Please

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