Vol 41 # 3 September 2009 - Kma.org.kw

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Population Health Genomics in Member Countries of the Cooperation Council for the Arab...
September 2009
based newborn screening program. Such
programs have been implemented to different
degrees in the GCC countries. Collaboration
between the GCC countries can help to
facilitate implementation, and the adoption
of a common screening program will facilitate
the future evaluation and implementation of
preventive and curative services [132,135] . Highrisk
newborns such as those born into families
in which genetic diseases have been identified
or to mothers aged 35 years and above should
receive further investigation to ascertain their
health status and enable early management,
thus improving outcomes for the newborn and
for the family as a whole [132,136] .
• National genetic disease surveillance system:
To be effective, a newborn screening program
must be supported by a surveillance system
for the collection of data, verification of results,
reporting of information to a centralized
database, data analysis, and dissemination
of results through national reports. At the
same time, the confidentiality of individual
information must be assured. Ongoing
surveillance would assist the assessment of
the overall burden of genetic diseases and the
adequacy and cost-effectiveness of existing
health services. A surveillance system can also
improve the research process by supporting the
generation and testing of hypotheses related to
genetic diseases and related services.
• Health care system and staff training:
Integrated primary, secondary, and tertiary
care centers working in tandem with diagnostic
services can decrease the burden of genetic
diseases in any country. Such facilities and
services also require specialized staff education
and training. Health care staff qualified in the
investigation, diagnosis, and management of
genetic diseases is essential in any health care
system. On-the-job training and continuing
medical education to develop specific expertise
in the field of genetic diseases can be provided
through conferences, seminars, workshops, and
courses [112,131,133] .
• Genomic health research: In spite of gaps in
our current knowledge, research to date on
genetic diseases and genetic health services in
the GCC countries does allow us to construct
a general profile of the needs of the region.
Because genomic research plays a central role
in any population health genomics program,
the process of collecting data from different
sources to assess the burden of genetic disease,
predisposing factors for genetic disease and the
best means of translating this knowledge into
evidence-based practice should be incorporated
into all components of a population health
genomics framework. Although researchers
have investigated rates of genetic disease
during the last 30 years, participation in areas
of inquiry that have developed more recently
is to be encouraged [56,57,62,64,69,80,83,137–139] . The
provision of supportive infrastructure to sustain
and improve research efforts is also strongly
recommended.This infrastructure could
include an electronic storage and reporting
surveillance system for genetic diseases, the
establishment of research institutes for genetic
research, including access to international
databases of medical literature, biological
banks for genetic samples, and funding and
incentives for research activities. The provision
of advanced education and training in health
genomics, together with collaborative work
with international centers and experts in genetic
research can significantly improve the quality
of research in this field [110,126] .
• GCC collaboration: The similar cultural, social
and economic background of the GCC countries
heightens the importance of collaboration
in the field of population health genomics.
Published research on the national populations
of the region has shown generally similar rates
of and shared predisposing factors for genetic
disease. The exchange of information among
the GCC countries will foster the development
of evidence-based, effective interventions and
will help to overcome gaps in our current
understanding.
• Evaluation and dissemination of knowledge:
Continuous evaluation of existing services
and activities related to the improvement of
population health genomics will help to determine
effectiveness and monitor improvements in
population health genomics. Evaluation should
be carried out on a regular basis and should
involve all the disciplines to identify gaps in
programs and services and support suggestions
for improvement. The results of evaluation
should be reported not only internally within a
particular discipline, but also across disciplines
and to the general public. Modifications to
existing programs should be made only after the
comprehensive evaluation of results and should
be based on the best available evidence on best
practices.