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Parental Rights & Children's Healthcare Issues

From enrolling teenagers in drug studies without parental consent, to collecting babies' DNA samples at birth without parental knowledge, there have been efforts to study pharmaceuticals in teenagers and screen newborns for genetic disorders without the consent of parents. Yet, DNA taken at birth without informed, parental consent means that every citizen becomes a potential subject of government-sponsored genetic research, notes Twila Brase of Citizens' Council on Health Care. She reported that in Minnesota, 42,210 children (out of 780,000 whose DNA was housed in the state's "DNA warehouse") were subjected to genetic research without their parent’s knowledge or consent.

This raises the important ethical question: Should newborn screening be mandatory or voluntary?

Bioethicist and health law professor George Annas notes that "the few parents who refuse newborn screening are, in fact 'morally justified in their refusal,' in part because the high rate of false positives poses health risks that may not be trivial.” He gives the following argument: “This may not strike one as an adequate reason for refusing PKU screening. But look into the future when we will be able to screen for 1,000 more diseases. Suppose, for example, a computerized screening test for 1,000 conditions. Suppose further that each of these tests has been so perfected that the false positive rate is only 1 percent. Each infant screened will then be diagnosed initially as suffering from 10 disorders, even though he/she suffers from none. If the false positive rate is 5 percent per test, he/she will appear to have 50 disorders, etc. The [more] tests that are performed for rare diseases, the more likely it is that pathology will be generated from the retesting procedures, and the more rational a decision not to screen initially becomes….The rare parent who refuses newborn screening, both today and in the future, is likely to be viewed as either a child neglector or an irrational anti-science fanatic. Neither label seems accurate or helpful…."

The issue of whether newborn screening should be mandatory or voluntary will become increasingly important with the growth in newborn genetic tests.

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(Summary updated November 2009)