You may remember those mean nurses poking your newborn in the heel and drawing blood for tests. You may not have realized at the time how many tests they would actually run and how revealing those test can be.
As technology has improved those newborn screenings can literally reveal hundreds of possible diseases – some that have current treatments and other that don’t. But how much do parents really want or need to know about their days-old infants?
“ ‘Newborn testing identifies at least 3,400 babies with a disorder each year, according to the Centers for Disease Control and Prevention. The programs generally have focused on well-understood medical conditions in which early intervention can make a difference in a baby’s life. For example, the genetic disease phenylketonuria, or PKU, if left untreated, causes a protein to build up in the body and leads to brain damage. A special diet, including low-protein foods, can prevent it.’ ”
“Proponents of broader screening programs say early intervention in a disease can improve a child’s life and might speed the development of treatments for rare diseases, where symptoms often don’t appear until severe damage has occurred. Often there are few specialists knowledgable about rare disorders, and newborn screening can save families years of anguish searching for a diagnosis. Some parents also say the information is important to know for family-planning purposes.”
“But critics say the additional tests may raise flags that lead to unnecessary further testing, or treatment, for babies who will not get sick. The tests can add big additional costs to the health-care system, they say. And some people are concerned about privacy, since stored blood-spot samples can be used by researchers. Some states give parents the ability to decide whether they want a child’s specimens used for research purposes.”
So what do you think? How much do you want to know? Do you want the option of not choosing to test? Do you not want to know? Do you only want to know diseases if they have a treatment for it or need to be treated right away?
How should these tests be used?