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Virginia Moyer, Steven M. Teutsch, and Jeffrey R. Botkin reply:
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Rodney Howell emphasizes the expert stature of the ACMG panel, even though that panel lacked experts on evidence review and did not utilize established methods for conducting a technology review. The primary point of our article was that screening recommendations for public health programs that affect every child born in the United States should be developed through a process that is transparent, unbiased, evidence based, and attentive to important societal and ethical values. We argued that the ACMG process failed to conform to that standard. Howell does not address this primary concern. The fact that the ACMG report has been influential in changing screening practices in the United States does not validate its methodology. Using the same evidence, European nations generally screen for fewer conditions.

We would also like to correct some misinterpretations of our paper. We did not argue that it was acceptable to begin treatment of diseases only after symptoms begin. We argued instead for careful consideration of clinical detection approaches when identification prior to symptoms is not necessary. We are well aware that conditions such as PKU, congenital hypothyroidism, sickle cell disease, and galactosemia must be identified before symptoms become apparent in order to reduce morbidity or mortality. Howell wonders whether we would deny penicillin prophylaxis to 50 percent of infants with sickle cell disease, failing to recognize that the USPSTF already gives newborn screening for sickle cell disease its strongest level of recommendation. However, even with sickle cell screening in place, fewer than 50 percent of identified children receive prophylaxis. This reinforces our point that even when highly effective treatments or preventive measures exist for a condition, screening programs may be only partially effective, or be ineffective, for other reasons. The existence of treatments alone is not a sufficient criterion for initiating population screening. There should be evidence that screening programs, with all of their linked components, are beneficial before screening is mandated for the entire population. When programs are initiated on a pilot basis, a data collection infrastructure should be in place to evaluate efficacy. Further, we may legitimately question whether additional resources for screening should be focused on improving the efficacy of existing programs where clear benefits have been shown, or on continually expanding programs to include new conditions for which we have limited evidence of efficacy.

We strongly support the development of a newborn screening translational research network to assist in gathering evidence for the screening and treatment of these important conditions. Stronger consideration should have been given to developing this infrastructure before the rapid expansion in newborn screening panels. We are encouraged to know that the ACHDNC is adopting an evidence review approach for new conditions. We are less certain than Howell that another review of the conditions on the ACMG panel would lead to the same results, but we would welcome a process that periodically reviews the evidence for current recommendations; indeed, that's what the USPSTF does for its own recommendations.

Project MUSE® - View Citation
R. Rodney Howell. and Nancy Green. "Every Child Is Priceless: Debating Effective Newborn Screening Policy." Hastings Center Report 39.1 (2009): 4-8. Project MUSE. Web. 7 Jul. 2014. <http://muse.jhu.edu/>.
Howell, R. R. & Green, N.(2009). Every Child Is Priceless: Debating Effective Newborn Screening Policy. Hastings Center Report 39(1), 4-8. The Hastings Center. Retrieved July 7, 2014, from Project MUSE database.
R. Rodney Howell and Nancy Green. "Every Child Is Priceless: Debating Effective Newborn Screening Policy." Hastings Center Report 39, no. 1 (2009): 4-8. http://muse.jhu.edu/ (accessed July 7, 2014).
TY - JOUR
T1 - Every Child Is Priceless: Debating Effective Newborn Screening Policy
A1 - Howell, R. Rodney
A1 - Green, Nancy
JF - Hastings Center Report
VL - 39
IS - 1
SP - 4
EP - 8
PY - 2009
PB - The Hastings Center
SN - 1552-146X
UR - http://muse.jhu.edu/journals/hastings_center_report/v039/39.1.howell.html
N1 - Volume 39, Number 1, January-February 2009
ER -

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