genetic disorders among arab populations || influences of systems’ resources and health risk...
TRANSCRIPT
Chapter 3
Influences of Systems’ Resources and Health
Risk Factors on Genetic Services
Amal A. Saadallah and Ahmad S. Teebi
Newborn screening (NBS) services and genetic testing are contemporary public
health preventive population-screening programs present in most developed
countries. Advances in laboratory technology and knowledge of metabolism and
genetics have led to an increased focus on screening for preventable causes of
disability and death in newborn babies. NBS services and genetic testing are
examples of health service trends that are extending globally. Currently, they are
spreading into several Arab countries (World Atlas, not dated) (Fig. 3.1), not
necessarily as national public health services but as supplementary, selective, or
pilot formats. As a product of this recent cascading trend, a stressing issue presents
itself, and requires close examination. Can national healthcare systems of the Arab
nations, most of which are developing, accommodate NBS and genetic testing as a
standard equitable national public health service? On the other hand, should this
service become only a high-risk approach, or a supplemental testing service? To
answer these questions and many others, we need to take a closer look to examine
factors that will influence these new or approaching services as they have affected
all the other established health services.
Healthcare Systems and Services
A healthcare system is an individualized national arrangement by which health care
is allotted to a population in a particular country. The health system includes all the
institutions, organizations, and resources (human and financial) that are dedicated
to producing health actions whose primary intent is to improve health (Alliance for
Health Policy and Systems Research, Geneva 2004). The goals for health systems
are good health, responsiveness to the expectations of the population, and fair
A.A. Saadallah (*)
Medical College, Ain Shams University, Cairo, Egypt
e-mail: [email protected]
A.S. Teebi (ed.), Genetic Disorders Among Arab Populations,DOI 10.1007/978-3-642-05080-0_3, # Springer-Verlag Berlin Heidelberg 2010
65
financial contribution (World Health Organization 2000). Organized health systems
in the modern sense evolved less than 100 years ago. First hospitals were built
followed by the founding of healthcare systems and the extension of social insur-
ance schemes. Afterwards, primary health care became a route for achieving
affordable universal coverage.
According to the World Health Organization (WHO, 2000), high-quality health
care is defined mostly by the criteria of effectiveness, cost, and social acceptability.
Goldman and McGlynn (2005) wrote that the Institute of Medicine (IOM) in the
United States of America has defined quality of care by a complex multi-dimensional
concept as follows. (1) People receive the care they need; if not, there is underuse of
services. (2) People do need the care that is provided for them; if not, there is
overuse of services. (3) Care is provided in a safe manner; if not, medical errors
exist. (4) Care is provided in a timely manner; if not, there are delays in services. (5)
Care is patient-centered; if not, there is unresponsiveness. (6) Care is delivered
equitably; if not, there are disparities and inequities. (7) Lastly, care is delivered
efficiently, with optimal use of resources, if not, there is waste.
Health services including established or proposed screening and genetic services
formulate parts of the overall healthcare system, and they thus have and will
become influenced by factors that affect it. Countries including Arab nations have
noninfinite resources coupled with constant demands that require frequent examina-
tion and selective balances. These include weighing scales between healthcare
needs and other population needs, providing care access within limitations of
resources, reaching a degree of equilibrium between curative and preventative
Algeria, Bahrain, Comoros, Djibouti , Egypt, Iraq, Jordan, Kuwait,Lebanon, Libya , Mauritania, Morocco, Oman, Palestine, Qatar, SaudiArabia, Somalia, Sudan, Syria, Tunisia, United Arab Emirates, andYemen.
Fig. 3.1 Names and locations of Arab countries
66 A.A Saadallah and A.S Teebi
care, allotting basic resources for primary care while still adopting new technolo-
gies, and assuring stability between private and public service entities.
Getting to ground zero, there are additional national pressures that face health
systems. Nations have to strive towards abolishment of under-service to certain
geographical locations and to certain subpopulations in a country. Health systems
have to produce well-trained and equally distributed workforce. Systems have to
be in a state of readiness to respond to all types of health threats starting from
natural disasters, epidemics, and extending to terrorist health threats. Along the
lines of the most recent trend of patient and consumer-centered care, countries
need to gain the views and seek consumer involvement in how services are
offered. This chapter will focus on some of these elements from the perspective
of the Arab part of the globe. This chapter will also shed light on several
parameters in an attempt to appraise the foundation and competency of healthcare
systems of the Arab nations and their reciprocal influence on the extent and types
of services offered including screening and genetic ones. To do so, this chapter
displays some graphs of various parameters of health systems of Arab nations
and compares them to those of an equal number of developed nations, namely
Australia, Austria, Belgium, Canada, Denmark, Finland, France, Germany,
Hungary, Iceland, Italy, Japan, Luxembourg, Netherlands, New Zealand, Norway,
Spain, Sweden, Switzerland, United Kingdom (UK), and United States of
America (USA).
Parameters of the occupied Palestinian Territories of West Bank and Gaza Strip
(World Health Organization Regional Office of the Eastern Mediterranean 2005)
are included in Table 3.1.
Table 3.1 Parameters of the occupied Palestinian territories
Indicator name Measure
Physicians’ density (per 1,000 population) 9.7
Nursing and midwifery personnel (per 10,000 population) 16
Neonatal mortality rate (per 1,000 live births) na
Infant mortality rate (per 1,000 live births) 20.5
Under-five mortality rate (per 1,000 live births) 23.8
Population with sustainable access to improved water source (%) 97
Population with access to improved sanitation (%) 100
Total expenditure on health as % of gross domestic product (GDP) 13.5
General government expenditure on health as % of total health expenditure 28.3
Out-of-pocket expenditure as % of total health expenditure na
General government expenditure on health as % of total general government
expenditure
na
Births attended by skilled health personnel (%) 97
One-year-olds immunized with measles vaccine (%) 100
One-year-olds immunized with DPT (%) 99
One-year-olds immunized with Hepatitis B vaccine (%) 100
Antenatal care coverage (%) na
na: Not available for latest entries
http://www.emro.who.int/emrinfo/index.asp?Ctry=pal
3 Influences of Systems’ Resources and Health Risk Factors on Genetic Services 67
Development Levels
Arab countries are 22 in number including, in alphabetical order, Algeria, Bahrain,
Comoros, Djibouti, Egypt, Iraq, Jordan, Kuwait, Lebanon, Libya, Mauritania,
Morocco, Oman, Occupied Palestinian Territories, Qatar, Saudi Arabia, Somalia,
Sudan, Syria, Tunisia, United Arab Emirates, and Yemen. All these countries are in
a developing state and six of them are at a least-developed status. The more
developed Arab countries include Algeria, Bahrain, Egypt, Iraq, Jordan, Kuwait,
Lebanon, Libya, Morocco, Oman, Palestine, Qatar, Saudi Arabia, Syria, Tunisia,
and United Arab Emirates. The least-developed Arab countries include Comoros,
Djibouti, Mauritania, Somalia, Sudan, and Yemen. They were categorized as least-
developed according to specific criteria identified by the Committee for Develop-
ment Policy (CDP). The CDP is a subsidiary body of the Economic and Social
Council (ECOSOC) of the United Nations (UN-Office of High Representative for
Least Developed Countries 2008). Currently there are 48 countries worldwide on
the list of least-developed nations, which is beyond the scope of this chapter. As six
of the Arab nations are least developed, it is important to clarify the criteria for
identifying Least-Developed Countries (LDCs). These criteria include (1) an eco-
nomic vulnerability criterion, (2) a human resource weakness criterion, and (3) a
low-income criterion. For more details, refer to the above-cited source.
In an attempt to upgrade their developmental statuses, all developing and least-
developed Arab countries joined the Group of 77, which came into existence on June
15 1964. It is the largest intergovernmental organization of developing states in the
United Nations (The Group of 77 at the United Nations 2008a,b). G-77 has bloomed
from its originating 77 members into 130 affiliate countries spanning from the
three world regions of Africa, Asia, and Latin America and the Caribbean. Even
though G-77 currently encompasses 130 member nations, the organization
kept the original name because of its historic significance. G-77 grants capacity
for the countries of the South to express and uphold their combined economic
interests and augments their mutual negotiating capability on all chief international
economic issues within theUnitedNations system. G-77 also promotes South–South
cooperation for purposes of development. G-77 also constructs mutual declarations,
action programs, and accords on development issues. Many G-77 countries
including the 48 LDCs put health, education, and defense as their most urgent
priorities (The Group of 77 at the United Nations 2006). This situation creates
challenges for enhancing science, technology, and innovation for the South, which
in turn will influence improvement in development statuses.
Health System Resources
Before discussing health system resources of Arab countries, it is of value to
mention their affiliation with the WHO, as a number of resources of this organiza-
tion are used to compile graphs and tables for this chapter (WHO, 2006a).
68 A.A Saadallah and A.S Teebi
The countries of Bahrain, Egypt, Iran, Iraq, Jordan, Kuwait, Lebanon, Libya,
Morocco, Oman, Qatar, Saudi Arabia, Somalia, Sudan, Syria, Tunisia, United
Arab Emirates, Djibouti, Yemen, and the Occupied Palestinian Territories of
West Bank and Gaza are part of the Eastern Mediterranean Regional Office
(EMRO) of the WHO. Algeria, Comoros, and Mauritania belong to the WHO
Regional Office for Africa.
Several factors affect capabilities of a country to provide health services for its
citizens. Also, these same factors can be used to measure or predict the capacity of
nations to provide their health functions. The WHO periodically examines the
healthcare systems and human resources of nations around the globe (World Health
Organization 2007a). By such type of health system inspection, an examiner could
gain insight not only into health aspects but also into the social, demographic, and
economic architecture of any country. From a health care and economic standpoint,
but not in the scope of this chapter, it is important to know the number of population
of a nation. This brings attention to the expected burdens and demands that a health
system as part of a country’s overall systems will go through. Direct resources
required for the establishment of national health services in Arab nations as well
as others include two broad factions namely financial and human. Two critical
measures of human resource capabilities of health systems used in this chapter
include density of physicians and nurses per 1,000 population.
Human Resources
National Health needs cannot be met without a well-trained, adequate, and available
health workforce (World Health Organization 2006b). It is critical to know that as
per theWHO there is a direct relationship between the ratio of health workers and the
survival of women during childbirth and children in neonatal period and infancy.
As the number of health workers declines, survival declines proportionately. Any
country with limited health workforce should examine the types of health services it
offers on national basis and those offered at supplemental or high-risk levels.
The 2004 Joint Learning Initiative report on human resources for health used
three categories to identify the density of health workers as low, medium, or high
(World Health Organization 2007a). Low density is less than 2.5 health workers per
1,000 population, medium is 2.5 to less than 5.0, and high density is 5.0 and more
health workers per 1,000 population. Most displayed developed countries have high
densities in human resources for both physicians and nurses (Figs. 3.2 and 3.3). It is
important to note that the LDCs of Comoros, Djibouti, Mauritania, Somalia, Sudan,
and Yemen display the lowest levels of densities of physicians and nurses compared
to the rest of the Arab countries. The overall density of physicians in all Arab
countries is low (less than 2.5 health workers per 1,000 population) with the
exception of Lebanon that has a medium density. However, the six Arab states of
the Persian Gulf namely Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, and the
United Arab Emirates have higher levels of physicians than the rest of the Arab
3 Influences of Systems’ Resources and Health Risk Factors on Genetic Services 69
Algeria Australia
Bahrain Austria
Egypt BelguimIraq C
anadaJordan D
enmark
Kuwait Finland
Lebanon France
Libya Germ
anyM
orocco Hugary
Om
an IcelandQ
atar ItalySaudi Arabia Japan
Syria Luxembourg
Tunisia Netherlands
UAE N
ew Zealand
Com
oros Norw
ay
Djibouti Spain
Mauritania Sw
eden
Somalia Sw
itzerland
Sudan UK
Yemen U
SA
0
2
4
6
8
Per
100
0 P
opul
atio
n
10
12
14
16
Arab Countries Developed Countries
Fig. 3.3 Nurses’ density
Algeria Australia
Bahrain AustriaEgypt BelguimIraq C
anadaJordan D
enmark
Kuwait Finland
Lebanon France
Libya Germ
anyM
orocco Hugary
Om
an IcelandQ
atar ItalySaudi Arabia Japan
Syria Luxembourg
Tunisia Netherlands
UAE N
ew Zealand
Com
oros Norw
ay
Djibouti Spain
Mauritania Sw
eden
Somalia Sw
itzerland
Sudan UK
Yemen U
SA
0
0.5
1
1.5
2
2.5
Per
100
0 P
opul
atio
ns 3
3.5
4
4.5
Arab Countries Developed Countries
Fig. 3.2 Physicians’ density
70 A.A Saadallah and A.S Teebi
countries in their density category (Fig. 3.2). The density of nurses in many Arab
countries is low. However, it is medium (2.5 to less than 5.0 health workers per 1,000
population) in Jordan, Tunis, and the six Arab states of the Persian Gulf (Fig. 3.3).
It is important to note that the six Arab states of the Persian Gulf namely Bahrain,
Kuwait, Oman, Qatar, Saudi Arabia, and the United Arab Emirates have significant
revenues from oil and gas and with their small populations have higher per capita
incomes in comparison to their neighboring countries. Even though monetary
revenues offer these countries the financial capabilities to establish affluent
health services, their small population sizes restrict national manpower capabilities,
pushing them to complement their deficits from Arab and other in-need nations,
producing shortages in human resources and brain drain in the source nations.
Financial Resources
The WHO measures financial capabilities extended to national health systems
and the financial constraints put on these systems by using several indicators.
These include total expenditure on health as percentage of gross domestic product
(GDP), general government expenditure on health as percentage of total govern-
ment expenditure, general government expenditure on health as percentage of total
expenditure on health, and private expenditure on health as percentage of total
Fig. 3.4 Total expenditure on health
3 Influences of Systems’ Resources and Health Risk Factors on Genetic Services 71
expenditure on health. Figure 3.4 demonstrates the total expenditure of Arab nations
on health and compares them to an equal number of developed nations. An
economic rule is that there is a direct correlation between GDP per capita and the
total health care spending per capita at any given point in time (Goldman and
McGlynn 2005). The chart displays the drastic differences between developed and
Arab countries in these aspects. Total expenditure on health as percentage of GDP
and general government expenditure on health as percentage of total government
expenditure denote the level of attention health care occupies compared to other
national endeavors. Comparing the two categories of general government expendi-
ture on health and private expenditure on health as percentage of total expenditure on
health will demonstrate the healthcare environment as market-minimized or market-
maximized. This is a critical factor, as the cost of establishment and maintenance,
and prices of testing and treatments need to be assigned as either provided hundred
percent free of charge; at a nominal fee; or carried hundred percent by private
entities, the parents, or their insurers. As such, each country needs to examine the
market location of its health sector and see if it is market-minimized, market-
maximized, or somewhere along Anderson’s continuum.
Risk Factors and Demands
Not only the resources discussed in the previous section, namely human and
financial resources, but also several other factors influence capabilities of health
services. These other factors collectively function as both risk factors for health and
health systems, and as demands on health systems. These include mortality rates,
national infrastructure, and burden of disease risk factors. Even though burdens of
diseases is an important stressor on a national health system, the scope of this
chapter does not accommodate its mention. This chapter provides several charts
that demonstrate different mortality rates and mortality profiles in Arab nations.
These charts demonstrate the following profiles: neonatal mortality rates (Fig. 3.5);
infant mortality rates (Fig. 3.6); mortality rates due to preterm births (Fig. 3.7);
mortality rates due to congenital anomalies (Fig. 3.8); and mortality rates due to
other causes (Fig. 3.9). To highlight the national impact of these measures the same
indicators of an equal number of developed countries including the USA and the
UK are incorporated in each of these charts.
Overall, the different mortality rates, namely neonatal mortality rates and infant
mortality rates, are higher in all Arab countries in comparison to the developed
countries (Figs. 3.5 and 3.6). But there are variables worth mentioning between
different Arab nations as follows. Iraq and the LDCs of Comoros, Djibouti,
Mauritania, Somalia, Sudan, and Yemen display the highest levels of neonatal
(25–63 deaths per 1,000 live births), infant (35–90 deaths per 1,000 live births),
and under five mortality rates (45–145 deaths per 1,000 live births) than the rest of
the other Arab countries (figure not included). Neonatal. Neonatal, infant, and
under-five mortality rates are lowest (<10 deaths per 1000 live births) in the
72 A.A Saadallah and A.S Teebi
Fig. 3.5 Neonatal mortality rate
Fig. 3.6 Infant mortality rate
3 Influences of Systems’ Resources and Health Risk Factors on Genetic Services 73
Fig. 3.7 Neonatal deaths due to preterm births
Fig. 3.8 Neonatal deaths due to congenital anomalies
74 A.A Saadallah and A.S Teebi
Arab states of the Persian Gulf namely Bahrain, Kuwait, Oman, Qatar, and the
United Arab Emirates, approaching the levels of developed nations, with the
exception of Saudi Arabia (>10 neonatal and >20 infant and under-five deaths
per 100 live births respectively) . This is probably due to the vast geographical size
of this country rendering access to health services inequitable. It could be also due
to local preference or necessity for home deliveries.
The causes of mortality in the first week of life (asphyxia, birth trauma, and
infection) relate directly to the birthing process. Interventions that provide for safe
delivery have a bigger impact in this period of a newborn’s life (Department of
Child and Adolescent Health and Development of the World Health Organization
n.d.). After the first week of life, various infections (sepsis, pneumonia, meningitis,
diarrhoeal diseases, and tetanus) are the most important contributors to mortality in
children in developing countries. Neonatal deaths due to tetanus, severe infections,
diarrheal diseases, and birth asphyxia are higher in the majority of Arab countries in
comparison to the developed countries. It is worth mentioning that deaths due to
tetanus, severe infections, and diarrheal diseases are lowest in the Arab states of the
Persian Gulf namely Bahrain, Kuwait, Oman, Qatar, and the United Arab Emirates
(�10% combined annual estimated neonatal deaths) in comparison to the other
Arab countries (18–59%), with the exception of Saudi Arabia (20%). It is evident
by examining all these data that prevention of overall mortality of neonates, infants,
and children under five will take priority over other activities through enhancing
basic maternal and child health services. Especially it is to be borne in mind that the
Fig. 3.9 Neonatal deaths due to other causes
3 Influences of Systems’ Resources and Health Risk Factors on Genetic Services 75
main reasons of death are birth asphyxia, tetanus, severe infection, and diarrheal
diseases, which supersede other causes of death like congenital anomalies, preterm
births, and other factors. It is critical to note that neonatal deaths due to congenital
anomalies is the highest in the Arab states of the Persian Gulf with the exception of
Saudi Arabia (<20% of the annual estimated neonatal deaths), namely in Bahrain
(>40%), Kuwait (>50%) , Oman (>25%), Qatar (�45%) , and the United Arab
Emirates (>60%) and also in Japan (>45%) in comparison to the other Arab
countries and developed countries included in the chart (Fig. 3.8) (World Health
Organization 2007b). This probably calls for NBS and genetic services among other
measures to be on the primary list of national health services for these nations.
The ECOSOC of the United Nations (UN), the WHO, and development aiding
banks assess progress in countries by several outcome and process indicators. One
category of these indicators involves the measure of extent of access, especially of
the poor, to such basic government services as health, education, infrastructure,
water, and power at the local level (United Nations 2004). A simple mode for
estimating the overall national competencies including the capabilities and
resources of healthcare services is by the measuring of the level of access to
improved drinking water sources, and improved sanitation. Two charts
(Figs. 3.10 and 3.11) demonstrate the percentages of population with sustainable
access of both improved drinking water and improved sanitation in the Arab
nations. Both these figures demonstrate the level of inequity (if existing) of alloca-
tion of water and/or sanitation services between rural and urban areas in each Arab
Fig. 3.10 Sustainable access of improved drinking water in Arab countries
76 A.A Saadallah and A.S Teebi
country. This will shed light on probable parallel trends in the existence of other
basic infrastructures like electricity, waste disposal, and roads. This will also reflect
presence of matching trends in the healthcare services provided. This is because a
prerequisite for establishment and proper operation of any health facility is the
presence of constant and intact infrastructures. Each country, Arab or otherwise,
that displays major disparities between its rural and urban areas is ethically required
to examine the health allocation disparities that will definitely arise if it chooses to
introduce what it will term a “national” NBS and genetic testing service. This is
because, to be effective these services demand the presence of not only intact
national infrastructures, but also dedicated and constant financial resources;
equipped facilities; modern modes of communication like telephones, faxing, and
Internet; prompt and constant delivery of health services; unremitting follow-ups;
and experienced workforce. An alternate route for countries facing such type of
situation is to provide NBS and genetic testing services as a high-risk approach or as
a supplemental testing service, and then nationalize these services as conditions
improve.
In conclusion, the product of the different mortality rates and profiles in each
country, coupled with inadequate rural and in some cases even urban access to both
improved drinking water and improved sanitation, highlights the extent of demands
on basic infrastructure as well as on primary health services in each Arab country.
Bearing in mind that as per the WHO, high-quality health care is defined by the
criteria of effectiveness, cost, and social acceptability, assuring primary health care
will probably take precedence over services like NBS and genetic testing for a few
Fig. 3.11 Sustainable access of improved sanitation in Arab countries
3 Influences of Systems’ Resources and Health Risk Factors on Genetic Services 77
years to come in several of the Arab countries. That is, if countries with such
parameters are seeking to satisfy equity, quality, and efficiency of their health
services on a national level.
Projection of Health System Performance
This section of the chapter will try to provide some insight into a simple mode for
directly predicting overall performances of health systems on national levels. It is
by examining health services coverages as monitoring (1) the percentages of
antenatal care coverage, (2) the percentages of births attended by skilled health
professionals, and (3) the percentages of children immunized. Even though moni-
toring the percentages of antenatal care coverage is a simple mode for directly
predicting the overall performances of national health systems of the 22 Arab
countries, Bahrain, Morocco, Oman, Saudi Arabia, and UAE did not measure
and/or did not report such data to the relevant WHO regional offices. Information
available on this performance measure is as follows. There are six data points for
“at least one visit of antenatal care coverage”, four of which have less than 80% of
their pregnant population receiving at least one antenatal care visit (66.7%). Also,
there are 14 data points for “at least four visits of antenatal care coverage,” 11 of
which have less than 80% of their pregnant population having at least four antenatal
care visits (78.6%). The dual situation of missing data and nonoptimal antenatal
care services are not encouraging as these trends could occur with delivering babies
or measuring the performance indicators of national NBS programs, as short-term
and long-term follow-ups of screened children.
Thirteen of the 22 Arab countries are close to 90% or even above in the
parameter of the percentages of the births that are attended by skilled health
professionals (Fig. 3.12). On the other hand, less than 80% of the births are attended
by skilled health professionals in Egypt, Iraq, Morocco, Somalia, Sudan, Yemen,
Comorous, and Mauritania. A small percentage of these numbers are due to local
customs of preference to home births over births in health centers or hospitals.
Another important type of national health services is that of nationwide vacci-
nation coverages. Closer examination of vaccination trends provides some insight
for gauging overall performances of health systems on national levels. This is
because, for a country to provide vaccination services to all its newborns and
children, it needs to solicit participation of several branches of its health system
on a national level. This national vaccination service activity parallels what will
be needed to establish newborn and genetic testing systems on a national level. But
we need to be cautious, as newborn and genetic testing systems are at a more
complex and demanding levels. Data on vaccination of 1-year-olds immunized
by one dose measles immunization and 1-year-olds immunized by three doses
DTP3 (diphtheria, tetanus, pertussis) immunization in most Arab countries are
comparable to those in developed countries. It is evident that Comoros, Djibouti,
Mauritania, Somalia, Sudan, and Yemen have the lowest immunization rates
78 A.A Saadallah and A.S Teebi
compared to the rest of the Arab countries. This is expected as these six countries
are categorized as least-developed (GNI per capita less than $750, weaknesses in
human resources, and economic vulnerability) as per the ECOSOC of the United
Nation (UN Office of the High Representative for the Least Developed Countries
2008). The coming section displays available genetic services in the Arab world as
to date.
Genetic Services in the Arab World
Excluding Gulf Cooperation Council (GCC) countries, Lebanon, Egypt, and
Jordan, medical genetic services in Arab countries are generally considered scant.
One of the early genetic services offered to the public was in Egypt as part of
university research. Late Dr Nemat Hashem of Ain Shams University in Cairo
started some genetic service in the early 1960s; later on, other academic institutions
in Cairo became involved. In 1966, Dr S. Temtamy earned her Ph.D from John
Hopkins University on her work on limb malformations and that formed the
basis of the book that was co-authored with Dr McKusick. Following this, she
initiated the department of Human Genetics within the National Research Centre in
Cairo. Later on, the department expanded remarkably to include a large number of
Fig. 3.12 Births attended by skilled health professionals
3 Influences of Systems’ Resources and Health Risk Factors on Genetic Services 79
researchers and clinical geneticists, many of whomwere students of Dr Hashem and
Dr Temtamy. Later on, Alexandria University developed genetic counseling
services (Dr S. Rushdy). This was followed by the development of services by
departments at the Universities of Mansoura, Suez Canal, Assuit, October 6, and
other universities. Most of these services remained to be selective.
In early 1960s, cytogenetic services became available in Lebanon, offered by the
American University of Beirut. Dr V Der Kaloustian was the leading geneticist in
Lebanon since his return from USA after he finished his training in Medical
genetics in late 1960s. He published his famous book on Genetics of Skin Disease
while in Lebanon. After he left for Canada in the 1990s, a new generation of
geneticists from different places continued to provide services in Lebanon; how-
ever, services remained scattered and not sufficient.
In Kuwait, Dr O Alfi initiated a cytogenetic laboratory and a genetic clinic in
late 1960s. This continued only for a few years, as he decided to immigrate to the
USA. However, comprehensive genetic services started in Kuwait in 1979 led
by Dr S. Al-Awadi. A group of geneticists/pediatricians including Dr T Farag,
Dr K Naguib, and Dr A Teebi were instrumental in providing high standard of
services and research that included neonatal screening. The invasion of Kuwait in
1990 caused delays in the development of more genetic services. They later
developed but at a slower pace, in particular with regard to neonatal screening.
In Saudi Arabia, King Faisal Specialist Hospital and Research Centre
(KFSH & RC) represents the leading comprehensive genetic service since its
establishment in late 1970s. Dr N Sakati who had pediatric genetic and endocrinol-
ogy training in the USAwas recruited to be the first geneticist there. The clinical care
provided at KFSH & RC covers diagnostic, therapeutic, and preventive interven-
tions with the presence of molecular, biochemical, and cytogenetics laboratories,
advanced treatment modalities, and the availability of preventive interventions via
prenatal diagnosis, preimplantation genetic diagnosis, and carrier screening, in
addition to well established genetic counseling services. Both Dr P Ozand and
Dr M Rashed left important landmarks during their service in the metabolic clinics
and laboratories. Less comprehensive, genetic services are also provided in other
Saudi healthcare institutions as in ministry of Health (MOH) tertiary centers, the
National Guard, and Military Hospitals; however, most of the services cluster in the
capital, Riyadh, with scattered services offered in other regions.
In the mid-1980s, a number of genetic clinics were developed in Bahrain, Oman,
and UAE and were supported by cytogenetic facilities; some were noticeably
expanded to involve molecular genetics and biochemical genetics laboratories.
The large number of genetic publications from UAE (Dr L Al-Gazali) and Oman
(Dr Anna Rajab) reflects the richness and diversity of clinical cases as well as the
scholarly activities of the physicians involved. Many of such publications are cited
elsewhere in this book.
In Qatar, the move was fast to include comprehensive genetic services including
premarital counseling and expanded neonatal screening, within less than 20 years
from the start of small cytogenetic laboratory at the main hospital in Doha in the
early 1990s.
80 A.A Saadallah and A.S Teebi
In Tunisia, similar to Egypt and Lebanon, some genetic services were offered as
part of research at universities or research centers. The interest in neurogenetic
disorders was clear since the 1970s (Dr M Ben Hamida) from the National Neuro-
logy Institute and then from Pasteur Institute. The involvement of other groups
came with the work of Dr H Chaabouni in the field of pediatrics genetics and
genetic counseling since the mid-1980s. Now, several centers across the country
offer diagnostic as well as counseling services but are still far from being compre-
hensive or sufficient.
The published work of Dr H Hamamy from Iraq and Dr M Salih from Sudan
points to some genetic services including diagnostic facilities that were available
in academic centers in their respective countries since the 1980s. However, it
remained fragmented because of the political situation or the lack of funding. In
Jordan and Morocco, some cytogenetic and molecular diagnostic facilities were
available since early 1990s. Clinical genetic services are available in one or two
locations in the country based in a university or an academic center. However, such
services are far from being able to cover the need of the population.
In Syria and Libya, very little diagnostic and clinical genetic services are offered
by pediatricians and other nongenetic specialists. Genetic testing is sent abroad on
demand basis only. In Comoros, Djibouti, Mauritania, Somalia, and Yemen, such
services are virtually not available.
NBS in the Arab World
In 2008, the second newborn conference of the Middle East and North Africa NBS
initiative was held in Cairo with representatives from most Arab countries exclud-
ing Algeria, Comoros, Djibouti, Iraq, Mauritania, Somalia, and Sudan. Represen-
tatives were asked to identify the current status of NBS in their countries.
According to their responses, the countries were put into three groups (Krotoski
et al. 2009). Group 1 included countries that have not begun national NBS. The
countries are Libya, Morocco, Syria, and Yemen. Morocco and Syria, however, had
developed plans to start some NBS in particular for congenital hypothyroidism.
Group 2 included countries that have completed pilot studies for at least one
condition and anticipated expansion to national programs. Countries in this group
are Jordan, Kuwait, Lebanon, and Tunisia. Group 3 countries included Bahrain,
Egypt, the Palestinian Authority, Oman, Qatar, Saudi Arabia, and United Arab
Emirates. All countries in this group screen for at least one condition, primarily
congenital hypothyroidism, and most screen for two or more conditions. Saudi
Arabia and Qatar use tandem mass spectrometry (MS/MS) for a large panel of
metabolic conditions. There is growing recognition in the Arab World of the
importance of NBS and its role in preventing or ameliorating mental retardation,
physical disability, neurological damage, and even death in disorders amenable to
NBS, particularly in those conditions in which treatment is simple and relatively
inexpensive (Saadallah and Rashed 2007).
3 Influences of Systems’ Resources and Health Risk Factors on Genetic Services 81
Common barriers for implementing NBS were the need of trained professionals
and obtaining financial and political support. Other difficulties included the issue of
geographic challenges due to large distances and isolated areas, as well the need for
policies to mandate NBS.
Conclusion
We have attempted to give a comprehensive preview on both the national and
healthcare levels to evaluate some of the resources, burdens, strengths, and weak-
nesses that affect national health systems in their respective Arab countries. Topics
discussed included healthcare systems and services, development levels, health
resources including human and financial, risk factors and demands, projection of
performance, and genetic services and NBS in the Arab world. This collective view
will probably help to answer the questions posed at the beginning of this chapter.
Can national healthcare systems of the Arab nations, most of which are developing,
accommodate neonatal screening and genetic testing as a standard service? More-
over, could these services prove to become efficient and equitable as part of a
national public health service? On the other hand, should these services only
become a high-risk approach, or a supplemental testing? Even though the directions
of responses to these and other questions could seem evident from the statistics and
the charts, the final answers lie mostly in the hands of authorities of each country on
the basis of its assigned health goals and priorities. At the end, it is pertinent to
add that the goals for national health systems are good health, responsiveness to
the expectations of the population, and fair financial contribution (World Health
Organization 2000).
References
Alliance for Health Policy and Systems Research, Geneva (2004) Strengthening health systems:
the role and promise of policy and systems research. http://www.who.int/alliance-hpsr/
resources/Strengthening_complet.pdf
Department of Child and Adolescent Health and Development of the World Health Organization
(n.d.) (IMCI) Technical seminar on the sick young infant. http://www.who.int/child-adolescent-
health/New_Publications/IMCI/WHO_FCH_CAH_01.10/Young_Infant/TS-Sick_Young_
Infant.doc
Goldman DP, McGlynn EA (2005) U.S. health care. Facts about cost, access, and quality. http://
www.rand.org/pubs/corporate_pubs/2005/RAND_CP484.1.pdf
Krotoski D, Namaste S, Raouf RK, El Nekhely I, Hindi-Alexander M, Engelson G, Hanson JW,
Howell RR, on behalf of the MENA NBS Steering Committee (2009) Conference report:
second conference of the Middle East and North Africa newborn screening initiative: partner-
ships for sustainable newborn screening infrastructure and research opportunities. Genet Med
11(9):663–668
82 A.A Saadallah and A.S Teebi
Saadallah A, Rashed M (2007) Newborn screening: experiences in the Middle East and North
Africa. J Inherit Metab Dis 30:482–489
The Group of 77 at the United Nations (2006) Conclusions and recommendations of the meeting of
ministers of science and technology. Meeting of the ministries of science and technology of the
member states of the Group of 77. Angra dos Reis, Rio de Janeiro, Brazil. http://www.g77.org/
mmst/conclusion.html
The Group of 77 at the United Nations (2008a) About the group of 77. http://www.g77.org/doc/
The Group of 77 at the United Nations (2008b) Member states of the group of 77. http://www.g77.
org/doc/members.html
UN Office of the High Representative for the Least Developed Countries, Landlocked Developing
Countries, and Small Island Developing States (UN-OHRLLS) (2008, July 17) The criteria for
identification of Least Developed Countries. LDCs. http://www.un.org/special-rep/ohrlls/ldc/
ldc%20criteria.htm
United Nations (2004) Economic and Social Council. Supplement 13. Committee for Develop-
ment Policy. Report on the sixth session, 29 March-2 April 2004. http://www.un.org/special-
rep/ohrlls/ldc/E-2004-33.pdf
World Atlas (n.d.) http://www.worldatlas.com/webimage/countrys/asia/arableag.htm
World Health Organization Regional office of the Eastern Mediterranean (2005) Palestine. http://
www.emro.who.int/emrinfo/index.asp?Ctry=pal
World Health Organization (2000) The world health report 2000. Health systems: improving
performance. http://www.who.int/whr/2000/en/
World Health Organization (2006a) WHO statistical information system. WHOSIS. Core health
indicators. http://www.who.int/whosis/database/core/core_select.cfm
World Health Organization (2006b) The global shortage of health workers and its impact. Fact
sheet N� 302. http://www.who.int/mediacentre/factsheets/fs302/en/index.html
World Health Organization (2007a) Human resources for health. http://www.who.int/whosis/
indicators/2007HumanResourcesForHealth/en/index.html
World Health Organization (2007b) World health statistics 2007. http://www.who.int/whosis/dat
abase/core/core_select.cfm?strISO3_select=btn&strIndicator_select=healthpersonnel&int
Year_select=latest&language=english
3 Influences of Systems’ Resources and Health Risk Factors on Genetic Services 83