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Genetic screening plan criticized

"As a doctor, I would choose to save more lives if I could."

Chien Ying-hsiu, a physician in the department of medical genetics at National Taiwan University Hospital

A health foundation says the Bureau of Health Promotion's new policy governing genetic health screening for babies may deprive parents of their right to know of all potential genetic disorders their babies might have.

Earlier this month the bureau announced that as of next month, six categories would be added to the new Tandem Mass (TM) examination, bringing the total categories to 11.

Tseng Min-chieh (曾敏傑), vice chairwoman of the Taiwan Foundation for Rare Disorders, said the new policy was a "fallback" and "inadequate" to fully screen genetic illnesses in newborns.

Parents receive only a partial subsidize from the bureau if their babies receive the screening and they cannot choose which categories are examined, the foundation said.

Under the screening program that the foundation has been promoting for years -- for which parents must pay full cost -- TM exams have been able to help diagnose 26 congenital disorders, Tseng said.

Covering the 26 categories would not cost the bureau additional money, she said.

Chien Ying-hsiu (簡穎秀), an attending physician in the department of medical genetics at National Taiwan University Hospital (NTUH), said the government only wants to screen for the 11 illnesses because the 11 are more common in Taiwan and there are treatments for them.

Using the TM, doctors can look for the 26 illnesses by processing one drop of blood from a newborn 72 hours after birth, but the bureau wants hospitals it works with to handle only the results of the 11 items, she said.

"As a doctor, I would choose to save more lives if I could," Chien said.

Tseng said though there were no fixed medical treatments for the 15 disorders excluded from the new testing regime, those with these disorders could receive non-medical therapies to control their illnesses.

Tseng said that 43 of the 105 babies who parents paid for them to have the full complement of TM screening between 2002 and last year had one of the 15 disorders not covered in the bureau's new regime.

"Babies like them will be sacrificed by the new policy," Tseng said.

Lin Hsuan-pei (林炫沛), a pediatrician at Mackay Memorial Hospital, said he was "confused" by the bureau's decision.

TM was widely used by hospitals before the bureau announced its new program, he said, and once the machine is set up, it can run the full 26-category exam at one time.

A parent surnamed Wang, whose child has one of the disorders not tested for, said his daughter would not have had to suffer for three years if her illness could have been diagnosed earlier.

In response, chief of BHP's maternal, infant and genetic health division Su Shu-chen (蘇淑貞) said that while the TM system can be helpful in discovering some 30 genetic disorders, other factors such special treatments for infants, also need to be considered.

It would only cause parents more anxiety if the government uncovers disorders with no possible treatments available, she said.
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