ents. Currently, fees to newborns’ parents range from zero to over $150,
with some states requiring repeat tests or charging by the specimen.
charges do not reflect the full cost of running the panels, which is largely
subsidized by the state and other funding sources.
Another key difference between states is the parental requirement to either opt-in or opt-out of newborn screenings. A majority of states allow
parents to opt-out of screenings.
44 In seven states, parents can opt-out for
any reason, while in all but four states the parents may opt-out on religious
45 The requirement for informed consent also varies, as only eleven
states require parents to be informed of the screening before it occurs, and
only two require consent to be given before testing may commence.
46 Additionally, requirements for the storage and use of residual blood samples acquired through newborn screening vary tremendously.47 Three states permit
the destruction of a child’s blood sample if requested by that child upon
48 Twenty states have laws that address the retention or
use of residual dried blood samples from newborn screening.
49 In four of
those states, the blood samples remain the property of the state.
50 On the
other hand, in ten states, the laws provide specific purposes for which dried
blood sample information may be utilized, including for public health purposes or research.
42. See Nat’l Newborn Screening & Global Res. Ctr., Newborn Screening (updated Oct.
4, 2013), http://genes-r-us.uthscsa.edu/resources/consumer/statemap.htm (click links for individual states). Kansas, Pennsylvania, New York and the District of Columbia offer NBS
free of charge, while Rhode Island charges the highest amount at $157.54. Id. Texas charges
parents per each mandated specimen ($29.50). Id. Arizona, requires two rounds of testing.
43. See id.
44. Michele Caggana et al., Newborn Screening: From Guthrie to Whole Genome Sequencing, 128 PUB. HEALTH REPS. (SUPPLEMEN T
45. Michelle H. Lewis et al., State Laws Regarding the Retention and Use of Residual
Newborn Screening Blood Samples, 127 PEDIATRICS 703, 707 (2011); PRESIDENT’S COUNCIL
ON BIOETHICS, supra note 1, at 88.
46. Maryland, Wyoming, and the District of Columbia require informed consent.
PRESIDENT’S COUNCIL ON BIOE THICS, supra note 1, at 89. However, the manner in which these three states require informed consent differs. Maryland requires informed consent through
regulation, while Wyoming and the District of Columbia both require parental consent
through statute. Id. at 89-90, n. 10.
47. A small amount of blood remains on the paper card following a newborn screening,
and this card with the residual blood spot is sometimes stored for future laboratory use. Caggana, supra note 44, at 17.
48. Michelle H. Lewis et al., State Laws Regarding the Retention and Use of Residual
Newborn Screening Blood Samples, 127 PEDIATRICS 703, 707 tbl. 1 (2011).
49. Id. at 706 tbl. 1.