SPECIAL SECTION: THE POWER OF CHOICE: AUTONOMY, INFORMED
CONSENT, AND THE RIGHT TO REFUSE
Should Parental Refusals of Newborn Screening Be Respected?
a1 Medical Ethics Unit, Imperial College,
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. a
a The author thanks Dr. David Aitken, Dr. Richard Ashcroft,
Professor Carol Dezateux, Dr. Katrina Hargreaves, Dr. Sandy Oliver, Dr.
Rosalind Skinner, Ruth Stewart, and two anonymous referees for their
valuable comments in drafting this paper.