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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

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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).

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