NCPA - National Center for Policy Analysis


July 23, 2004

Hundreds of genetic tests are now available, but doctors and patients have little guidance on when testing is appropriate, say observers. As a result, whether a test is even offered to a patient may be a doctor's arbitrary decision. For example,

  • In recent years, screening potential parents for a gene that causes 80 to 90 percent of inherited deafness among Ashkenazi Jews was not routinely offered -- because the deaf community argued deafness is not a disease.
  • Three years ago, the American College of Obstetricians and Gynecologists (ACOG ) recommended that the test for cystic fibrosis be mentioned to all people seeking preconception or prenatal care, regardless of family history -- but it does not recommend routine screening for Fragile X, the most common inherited form of mental retardation, which is almost twice as prevalent.
  • Newborn screening can detect some 30 different diseases, but the cost of the full range of tests is not justified by the small number of cases identified, say doctors.
  • A handful of states require the full battery of newborn tests, and the March of Dimes has called on all states to requires at least nine of them, noting that only one-third of newborns receive the minimum testing the organization recommends.Experts caution that the full range of tests can run to thousands of dollars, many conditions are rare and health insurance doesn't cover many of them routinely.

Source: Amy Harmon, "As Gene Test Menu Grows, Who Gets to Choose?" New York Times, July 21, 2004.

For NYT text


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