MONDAY, Dec. 21 (HealthDay News) -- Most prospective Dutch parents favor adding childhood-onset disorders to the national newborn screening program even if they're untreatable, according to research published online Dec. 21 in Pediatrics.
Anne Marie Catharina Plass, Ph.D., of the VU University Medical Center in Amsterdam, Netherlands, and colleagues analyzed data from 1,372 mostly female individuals planning to have a child in the near future who responded to an online questionnaire.
The researchers found that virtually all respondents believed that treatable disorders should be added to the screening program once appropriate tests became available. The proportions who felt this way about less treatable and untreatable disorders were 88 and 73.3 percent, respectively. Parents who supported testing for untreatable disorders frequently listed "to prevent a long diagnostic quest" as a reason.
"The results of this study are relevant for the discussion on expanding newborn screening. The opinion of prospective parents should be given more weight in addition to experts' opinion and decision-making. These results therefore pose a challenge to all involved in health care and policy concerning expansion of newborn screening programs. It seems no longer desirable to leave decisions on these issues in the hands of experts only on the basis of presupposition," the authors write.
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