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NY Times: Insurance Fears Cause Many to Avoid DNA Test

Patients are becoming more and more fearful about asking their doctors for genetic DNA tests over concern that they will not be able to acquire health insurance due to results showing up in their medical files and the high cost of some treatments—such as Alpha-1 augmentation therapy..

“Victoria Grove wanted to find out if she was destined to develop the form of emphysema that ran in her family; but she did not want to ask her doctor for the DNA test that would tell her.

She worried that she might not be able to get health insurance, or even a job, if a genetic predisposition showed up in her medical records, especially since treatment for the condition, alpha-1 antitrypsin deficiency, could cost over $100,000 a year. Instead, Ms. Grove sought out a service that sent a test kit to her home and returned the results directly to her.

Nor did she tell her doctor when the test revealed that she was virtually certain to get it. Knowing that she could sustain permanent lung damage without immediate treatment for her bouts of pneumonia, she made sure to visit her clinic at the first sign of infection…”

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