Many infants not tested for rare disorders

July 11, 2006|By LOS ANGELES TIMES

The percentage of newborns screened for more than 20 of the 29 treatable genetic disorders suggested by the American College of Medical Genetics nearly doubled in the past year, but nearly a third of the 4 million babies born each year are screened poorly, according to a report released yesterday by the March of Dimes.

Every child born in the United States is tested for hypothyroidism and the blood disease sickle cell anemia. They are also tested for the metabolic diseases phenylketonuria and galactosemia. The number and type of additional tests a newborn receives are then determined by each state.

In 2004, at the federal government's request, the ACMG recommended a battery of 29 tests, including a hearing test and blood tests for 28 rare but serious diseases. All of the conditions tested for can be treated or managed if caught in time.

Thirty-one states require more than 20 of the suggested tests, up from 23 in 2005, according to the report. As a result, 64 percent of babies are screened, compared with 38 percent in 2005. Eight states - Arkansas, Kansas, Montana, New Mexico, Oklahoma, Pennsylvania, Texas and West Virginia - require fewer than 10 of the recommended tests.

Comprehensive programs that test for all 29 disorders are in place in five states - Iowa, Maryland, Mississippi, New Jersey and Virginia - and the District of Columbia, accounting for 9 percent of all babies born in the United States.

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