PEDIATRICS Vol. 106 No. 2 Supplement August 2000, pp. 383
Preface
Administrator HRSA
Maternal and Child Health Bureau HRSA
Maternal and Child Health Bureau HRSA
Each year the 4 million infants born in the United States
are screened shortly after birth to detect a variety of congenital conditions. These public health screening programs have become models
for population-based screening. Newborn screening programs in this
country began with the work of Dr Robert Guthrie in the 1960s with the
development of a screening test for phenylketonuria (PKU). Today, all
states screen for a wide range of conditions. However, the array of
screening tests performed by each state varies and changes
periodically. The variability reflects differences in community values,
in state political and economic environments, and in technical
capabilities.
The Health Resources and Services Administration's (HRSA) Maternal and
Child Health programs have supported the development of these programs
from their inception. HRSA funded the early work of Dr Guthrie to
develop the screening test for PKU, sponsored cost-effectiveness
studies for the PKU screening test, and facilitated the expansion of
newborn screening programs to include screening tests for sickle cell
anemia. In recognition of this historical involvement with state
newborn screening programs, HRSA requested the American Academy of
Pediatrics (AAP) to convene The Task Force on Newborn Screening.
Genuine concern for the health of infants and children demands a
periodic assessment of health service programs such as newborn
screening so that these programs can provide better service. The Task
Force on Newborn Screening addresses this responsibility in a
thoughtful and comprehensive manner. The charge to the Task Force was
to review and evaluate the issues and challenges facing the nation's
newborn screening programs and to make recommendations to strengthen
these programs. This Task Force has appropriately involved many groups
and individuals from within and outside the newborn screening,
pediatrics, and genetics communities, representing a diversity of views
and expertise.
The Task Force recommendations were developed with recognition that the
environmental context within which these programs were established has
changed dramatically over the past 10 years. The growing impact of
consumer advocacy has resulted in a congressional directive to federal
agencies to expand and evaluate newborn screening programs. New
technologies such as tandem mass spectrometry and DNA-based tests offer
the possibility for screening for additional conditions. Changing
demographics emphasize the importance of understanding the cultural
uniqueness in approaches to health. The Human Genome Project provides
the basis for understanding variations in risk among individuals for
medically important and genetically complex human diseases. This
project brings new understandings about race and ethnicity. The
advances in basic and clinical science and technology resulting from
the Human Genome Project will offer unparalleled promise to improve
abilities to promote health and prevent, diagnose, and treat diseases
in children. Not to be forgotten will be those essential ethical,
legal, and social questions that must be addressed as well as the
challenge in balancing the need to both protect a population's health
and to respect individual rights. Further, with the advent of new
technologies and new knowledge, it is critical that the newborn
screening programs continue to operate under sound public health
principles and are connected to medical homes to provide care that is
accessible, family-centered, continuous, comprehensive, coordinated,
compassionate, and culturally competent.
The task of proposing changes to meet the challenges of the 21st
century, while preserving the accomplishments of the past, has been
undertaken with objectivity, sensitivity, and creativity by the newborn
screening, pediatric, and genetics communities. One outcome of this
process is the report published here. It will provide a basis for
constructive dialogue and for setting a national agenda for progress.
The HRSA wishes to thank the Task Force and members of the workgroups
for their hard work and their commitment to this process. We also wish
to recognize the leadership that the AAP brought to the success of this
process. Finally, we would like to acknowledge Linda L. McCabe, PhD,
for her skillful editing of this report.
Pediatrics (ISSN 0031 4005). Copyright ©2000 by the American Academy of Pediatrics
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