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Meeting Proceedings |
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Meeting Proceedings |
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MCHB
Genetics Services Branch Mission
The
mission of the Genetics Services Branch is to facilitate the early
identification of individuals with genetic conditions and integrate them
into systems of service and care that are accessible, available,
affordable, acceptable, population and community-based, culturally
appropriate and family-centered and to increase knowledge of the genetic
contribution to health and disease upon which services are developed. The
Genetics Services Branch recognizes a partnership with consumers of
genetic services is required to carry out this mission. The
goals of the Branch are to: 1.
Encourage the linking of State Newborn Screening Programs and other
points of early identification of individuals with genetic conditions with
systems of care and appropriate treatment interventions. 2.
Strengthen the development of public health infrastructure to
increase knowledge of the epidemiology of genetic conditions, strengthen
the national capacity to assess the prevalence of genetic risk factors and
assure interventions to reduce morbidity and mortality. 3.
Improve the genetic literacy of the public to enhance understanding
of the benefits, risks, and limitations of genetic screening and testing,
and the meaning and implications of genetic information. 4.
Facilitate the development of well-prepared health care, social
service and public health professionals capable of communicating the
benefits, risks and limitations of genetic screening and testing and
accurately interpreting and appropriately utilizing genetic information in
clinical and public health practice. 5.
Support the Hemophilia Treatment Centers’ program as a model for
the comprehensive management of a population with special health needs
that would include genetic testing, including carrier status, counseling,
early identification, intervention, education, and coordinated care. History
Through
Title V of the Social Security Act, the Federal government's Maternal and
Child Health (MCH) program began providing national leadership and support
to states to develop genetic services capability long before there was a
legislative mandate for a Federal genetic services program.
This included the support of child development clinics in the 1950s
and state newborn screening programs for metabolic disorders in the early
1960s. By the mid-1960s, the
MCH program was also supporting biochemical and cytogenetic laboratory
training programs and university affiliated programs to provide broad
interdisciplinary training in the diagnosis and management of individuals
with handicaps or mental retardation. The
1972 Sickle Cell Anemia Control Act was the first Federal legislation
concerned with genetic disorders. The
National Institutes of Health (NIH), which was responsible for
implementing the Act, transferred funds under this authority to the MCH
program to develop community-based sickle cell education, screening, and
counseling services. In
1978, the Federal MCH program, through the National Genetic Disease Act
(Title XI of the Public Health Service Act), began to build and improve
genetic services at the state level by providing funding for statewide
genetic services programs. It
took 13 years, until 1990, for all 50 States, the District of Columbia,
Puerto Rico, and the Virgin Islands to complete this Federal grant program
activity. Federal funding to
develop and improve statewide genetic services programs was provided with
the understanding that States would continue these programs when Federal
support ended. Today, all States have taken over this responsibility, with
the scope of services available varying from State to State. Through
Special Projects of Regional and National Significance (SPRANS) funding,
the MCH program has established demonstration projects to target genetic
literacy, training, service delivery and infrastructure development and
the evaluation of technology within a service system.
Projects
were established to: 1.
Overcome ethnocultural barriers and increase access to and
utilization of genetic services for populations confronted by language and
cultural barriers. 2.
Initiate
model programs for transition from pediatric to adult family and specialty
care for persons with genetic conditions. 3.
Develop and implement innovative approaches to enhance knowledge
and understanding of genetics among primary care providers, to increase
their role in genetic services and systematically establish formal
linkages between specialized genetic services and primary care and support
services at the community level. 4.
Integrate genetic services into primary care and evaluate the
delivery of health care, under the structure of managed care
organizations, to children with genetic conditions. 5.
Establish consumer networks and consumer-oriented projects.
The involvement of families in our programs has always been of
paramount importance to HRSA. And
currently MCHB is funding a consortium of consumer groups, as well as the
Alliance of Genetic Support Groups to promote consumer and professional
partnerships in the delivery of genetic services and to serve as a network
to provide information about genetics to consumers. 6.
Facilitate the formation of regional genetic service and resource
networks. From the late 1970s
to the early 1980s, several regional genetics networks came into existence
to examine needs, coordinate services, share resources, collect data, and
conduct other activities at the regional level.
In 1983, the MCH genetic services program began to provide funding
for these networks. Currently
10 genetic service and resource networks exist, with variable levels of
federal funding. 7.
Support the Hemophilia Treatment Centers as a model for the
comprehensive management of a population with special health needs.
In
Fiscal Year 1999, the genetics program began two initiatives to focus on
facilitating the development of a public health infrastructure necessary
to integrate appropriate genetic services and education into existing
public health and health care delivery systems: 1.
State Planning Grants. Through
this initiative funded states are to develop state genetics plans, to
include programs in newborn screening and other early identification and
prevention measures, and collaborative efforts with primary care
providers, thereby setting a framework for a genetic service
infrastructure and partnerships among state public health programs,
primary care providers, the genetics community and service consumers. 2.
National Newborn Screening and Genetic Resource Center.
This center is established to assist the states and MCHB in
outlining national policy, to provide technical assistance for newborn
screening and genetic services and to serve as an educational resource. Staff
at the Genetics Services Branch: Judy
Hagopian For
more information, please contact the Genetic Services Branch at
301-443-1080. |