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|Title: ||“Should parental refusals of newborn screening be accepted?”|
|Authors: ||Newson, A.J.|
|Issue Date: ||2006|
|Publisher: ||Cambridge University Press|
|Citation: ||Newson, A.J. (2006) “Should parental refusals of newborn screening be accepted?” Cambridge Quarterly of Healthcare Ethics, 15(2): 135-146.|
|Abstract: ||For over four decades, knowledge that symptoms of some inherited diseases
can be prevented or reduced via early detection and treatment in newborns has
underpinned state-funded screening programs in most developed countries.
Conditions for which newborn screening is now a recognized preventative
public health initiative include phenylketonuria (PKU), congenital hypothyroidism (CHT), and, more recently, cystic fibrosis (CF) and sickle cell disorder
(SCD). The use of tandem mass spectrometry to detect conditions such as
amino-acidopathies and fatty-acid oxidation defects is also becoming increasingly prevalent.
The early identification of children who are at risk for these conditions can
have very positive implications. To take the most significant example, a child
born with mutations that would otherwise lead to symptoms of PKU will have
a vastly different kind of life if the condition is detected in early infancy rather
than later. The introduction of a modified diet at this time, although cumbersome, will prevent the onset of severe mental impairment, allowing the child to
lead a virtually normal life.
Although clinical indications are sometimes more contentious when justifying screening for other conditions, by and large newborn screening is clinically
valid and carries only minimal risk. However, it is sometimes declined by
parents, presenting healthcare professionals with an ethical, legal, and practical
dilemma. Consider the following scenario: Emma and Tom both work as
pediatricians in a large city hospital. They have recently had their third child,
a daughter named Clare. During a postnatal visit to their home by a midwife,
Emma indicates that she and Tom do not want Clare to have any newborn
screening. Emma reports there is no family history of any of the diseases being
screened for, and she feels strongly that the probability Clare will have any of
the conditions is so low that it cannot justify subjecting her to an invasive test.
This scenario gives rise to three issues, each addressed below. First, is Emma
and Tom’s refusal of newborn screening for Clare justifiable? Second, should
the law ever mandate newborn screening over parental objections? Third, howshould such refusals be managed in practice? Using the example of PKU
screening, it is argued that although refusals are often difficult to defend, legal
intervention is unjustified as a means of compelling parents to allow their
infant to be screened. Nevertheless, the state may be justified in exercising
some degree of “influence” over parental decisionmaking, via the practices of
health professionals involved in newborn screening.|
|Rights and Permissions: ||Publishers version/PDF after 12 month embargo Publisher copyright and source must be acknowledged with set statement; Must link to publisher version|
|Type of Work: ||Article|
|Type of Publication: ||Post-print|
|Appears in Collections:||Research Papers and Publications. Sydney Health Ethics|
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