Population-based studies are needed to determine how the results of
genetic tests predict the development of disease.
For each genetic variant, data on prevalence and correlation with disease
in different populations will help determine the risk for various groups for
developing the disease.
Since a particular genetic test’s sensitivity and specificity may vary
in each population, different tests may need to be employed in different
populations.
CDC’s population-based research initiatives focus on a wide range of
diseases (infectious, chronic, occupational, early-onset childhood) in which
gene-environment interaction plays a sizeable role.
Costs of genetic testing are significantly higher than are those for other
health services. Current funding sources include contracts with state health
departments (major source), hospitals, laboratories, medical schools, HMOs,
and fees for service.
Maternal Child Health Block Grants fund newborn screening, genetics
resource centers, and integrated state information systems based on needs
assessments and health status indicators. http://www.mchdata.net.
Quality of testing among numerous laboratory sites must be assured.
Clinical validity (the accuracy of the test in predicting disease) and
clinical utility (the health benefits of taking the test) must be
determined.
Data collected around genetic testing should be used more effectively.
Through public-private partnerships, organizations can share information and
expertise in research, education, and policy.
The Department of Health and Human Services Genetics Task Force, an
interagency group, is conducting two pilot studies in hemochromatosis and
cystic fibrosis to provide a model data framework for assessing the accuracy
and benefits of future genetic tests.
Funding for "bioterrorism" is expected to upgrade public health
systems overall, with a spillover effect for epidemiologic research,
laboratory studies, and electronic communication.
Educating the public about using genetic information for preventing
disease is difficult due to the popular focus on treatment. "Know your
family history" may be one broad-based public health message to help
prepare for the new era of medical care.
Decision-makers, legislators, policy-makers, insurers, employers, and
consumers need education about the psychosocial and ethical issues in using
genetic information.
National Institutes of Health educational efforts recognize that the
public has a right to information on genetics and disease. The Human Genome
Project’s use of the Internet provides a model for educational efforts.
http://www.nhgri.nih.gov/
Health Resources and Services Administration supports university-level
courses and faculty development and funds demonstration projects on the
integration of genetics into primary care. http://www.mchb.hrsa.gov/
CDC provides public health professionals with information about genetics
and disease prevention at its Web site and through conferences, workshops,
training, and career development opportunities. http://www.cdc.gov/genetics/
Several schools of public health now support academic programs on public
health genetics. These programs combine biostatistics, epidemiology, basic
sciences, and health policy.
The Secretary’s Advisory Committee on Genetic Testing (SACGT) is
addressing the oversight of predictive genetic testing and the balance
between access to testing and assurance of its appropriate use. http://www.nih.gov/od/orda/sacgtpress.htm
Most lawmakers understand the need for basic genetic research but not for
research on how to apply the findings to populations. Policies regarding the
potential impact of genetics information lag behind support for genetic
discoveries.
When describing a program to Congress, it is important to give examples of
who will be helped and how much money will be saved and to quantify
the resources needed, provide justifying scientific data, and demonstrate
collaboration and cooperation.
The proposed Genetics and Public Health Services Act provides two pathways
for integrating genetics into public health services: a block grant approach
for developing ways to use genetic information and grants for studying ways
to translate research into practice.
The public health challenge is to use genetic information to develop safe
and effective interventions to improve health, from screening for
early-onset diseases such as PKU or sickle cell disease, to identifying
genetic susceptibility to adult-onset diseases.
Genetics, integrated into the "10 essential public health
services," includes identifying community health problems with a
genetic basis; educating people to use genetic information to improve
health; and ensuring appropriate genetic testing and counseling.
HRSA is primarily responsible for ensuring equity of access and
patients’ understanding of the new tests and therapies. Women with low
education and income levels are the least likely to receive genetic
counseling services.
Evaluation of health service delivery at the state level includes the
analysis of state newborn screening programs, early identification of
children with gene-linked disorders, and a Council of State and Territorial
Epidemiologists - Association of State and Territorial Health Officers
survey of state genetics-related activities.
The CDC Office of Genomics and Disease Prevention
makes this information available as a public service only.
Providing this information does not constitute endorsement by the CDC.
