genetic disorders that in the past could have led to years of unnecessary
testing and treatment due to misdiagnoses could now be discovered shortly
following a child’s birth.
75 Parents may also learn if their child is at an increased risk for certain childhood diseases and implement necessary prevention programs at an early age.
WGS on newborns could impact the individual and population’s health
in terms of disease treatment. One significant public health concern – pediatric adverse drug events (ADEs) – would be greatly impacted by a WGS
76 Children are three times more likely to suffer from an ADE
than adults, and over half a million children seek outpatient care for ADEs
77 The field of pharmacogenomics offers the potential to reduce
ADEs and to enhance the efficacy of pharmaceutical drugs by identifying
gene variants that could affect a person’s response to a drug.
78 With a whole
genome in hand at a child’s birth, such information may potentially reduce
the number of dangerous pediatric ADEs by providing a personalized
roadmap to how a child may respond to a medication prior to the medication’s administration. This is especially important for pediatric cancer patients. Twenty-two percent of all hospital admissions for pediatric cancer
patients are due to an ADE.
79 The consequences of an ADE in a pediatric
cancer patient can be life-threatening or leave the patient with long-lasting
disease or disabilities.
80 Gene variant identification can improve treatment
outcomes for pediatric cancer patients by identifying which patients are at
an increased risk for adverse reactions and manipulating the treatment plan
PHARMACOGENOMICS 345 (2005). Public health genomics is an emerging field that seeks to
utilize genetic variation and gene-environment interaction data to design and implement
mechanisms to prevent disease and improve overall health status. M.J. Khoury et al.,
A Decade of Public Health Genomics in the United States: Centers for Disease Control and Prevention 1997–2007, 12 PUB. HEALTH GENOMICS 20, 21 (2009).
75. See PRESIDENT’S COUNCIL ON BIOETHICS, supra note 1, at
14; see also B. D. Solomon et al., Applying Genomic Analysis to Newborn Screening,
59, 66 (2012). While positive movement in research and surveillance may
occur, it is also important to note that negative repercussions may result from the WGS of
newborns. PRESIDENT’S COUNCIL ON BIOETHICS, supra note 1, at
70. For example, there is
potential for immense stress and anxiety from false positives or from positive tests for conditions that may never manifest. See id.
76. See Dennis J. O’Kane et al., Pharmacogenomics and reducing the frequency of adverse drug events, 4 PHARMACOGENOMICS 1, 3 (2003).
77. Florence T. Bourgeois et al., Pediatric Adverse Drug Events in the Outpatient Setting: An 11-Year National Analysis, 124 PEDIATRICS e744, e747-48 (2009); Donna Woods et
al., Adverse Events and Preventable Adverse Events in Children, 115 PEDIATRICS 155, 158
78. See Colin J. D. Ross et al., Pharmacogenomics of Serious Adverse Drug Reactions
in Pediatric Oncology, 18 J. POPULATION THERAPEUTICS & CLINICAL PHARMACOLOGY e134,
e144 (2011); Dennis J. O’Kane et al., Pharmacogenomics and Reducing the Frequency of
Adverse Drug Events, 4 PHARMACOGENOMICS 1, 1 (2003).
79. Ross et al., supra note 78, at e134.