whole could benefit through research of disease trends through surveillance
from data collected as a result of WGS of newborns.
97 Public health researchers could not only survey the current status of disease patterns, but
also be able to research future population health needs.
98 Funding could be
allocated to research diseases for which large groups of the population are
known to be at risk. Instead of retrospective research of disease, studies
could be done prospectively to advance further disease treatment.
Standardizing newborn WGS also has the potential to reduce health dis-parities throughout the population by improving and equalizing care. In particular, though all states are required to meet a federal minimum panel, most
states have added additional conditions to their screenings. Thus, currently,
children born in particular states receive more information than children located in a state testing for a smaller number of conditions. If WGS is implemented as the standard for population-wide newborn screening, its benefits would not be limited to certain residents in particular states or to those
that can afford genomic testing.
VI. POLICY CONSIDERATIONS FOR FUTURE IMPLEMENTATION OF A WGS
All fifty states maintain a newborn screening program and statutory and
regulatory laws govern how the programs operate. An overhaul of state law
will therefore be necessary for a WGS newborn screening approach to exist.
For certain disorders, such as PKU, current newborn screening testing may
be more accurate than a DNA-based testing.
100 Therefore, WGS may be im-
plemented alongside current newborn bloodspot screening, rather than re-
101 It may also be implemented in a manner allowing parents to se-
lect the WGS of their newborn child, in addition to the traditional heel stick
97. Public health surveillance allows the public health community to monitor infectious
and noninfectious diseases, birth defects, injuries, illicit drug use, mental illness, and occupational and environmental exposures. James W. Buehler, Introduction, 61 MORBIDITY &
MORTALITY WKLY. REP. (SUPPLEMENT) 1, 1 (2012), available at
98. See Lawrence O. Gostin & James G. Hodge, Jr., Genetic Privacy and the Law: An
End to Genetics Exceptionalism, 40 JURIMETRICS
21, 39 (1999) (“Carefully planned surveillance or epidemiological activities facilitate rapid identification of health needs.”).
99. See, e.g., Mark A. Rothstein, The Case Against Precipitous, Population Wide,
40 J. L. MED. & ETHICS 682, 685 (2012) (explaining the concern
for a lack of equitable access to genetic services when implementing population-wide whole
100. Beth A. Tarini & Aaron J. Goldenberg, Ethical Issues with Newborn Screening in
the Genomics Era, 13 ANN. REV. GENOMICS & HUM. GENETICS 381, 389 (2012).
102. See Yuval E. Landau et al., Genomics in Newborn Screening, 164 J. PEDIATRICS
14, 18 (2014); see also How are newborn screening tests done?, supra note 7 (explaining the