Life in genetic limbo: You’ve got the gene but, so far, no disorder

Darek Zon
Credit: Darek Zoń/Flickr

The expanding use of genetic testing is having an unforeseen consequence: More people are being told they have genes for potentially fatal diseases but don’t show any symptoms.

Experts call these people patients-in-waiting. They can live in medical limbo for years while they and their doctors wonder if and when a disease, such as cystic fibrosis, will develop. Another dilemma: Doctors are sharply divided about whether to begin treatment in hopes of preventing the disease’s onset.

At Children’s Hospital Los Angeles, the cystic-fibrosis clinic tracks 250 patients. Of these, 70 are patients-in-waiting. Danieli Salinas, a pediatric pulmonologist at the clinic, says she tells these patients and their families: “You have the genetic potential to develop cystic fibrosis, which could be next month, next year, when you are 60 years old, or never.”

Read the full, original story here: Genetic Testing Leaves More Patients Living in Limbo

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