skreening

7/29/2019 skreening

1/7

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

ORIGINAL ARTICLE

Premarital screening programmes for haemoglobinopathies,HIV and hepatitis viruses: review and factorsaffecting their successFahad M Alswaidi and Sarah J OBrien

J Med Screen 2009;16:2228DOI: 10.1258/jms.2008.008029

See end of article forauthors affiliations. . . . . . . . . . . . . . . . . . .

Correspondence to: FahadM Alswaidi, 81Brantingham Road,Manchester, M16 8SA, UK;[email protected];[email protected]

Accepted for publication20 November 2008. . . . . . . . . . . . . . . . . . .

This literature review is a comprehensive summary of premarital (prenuptial) screening programmesfor the most prevalent hereditary haemoglobinopathies, namely thalassaemia and sickle celldisease, and the important infections HIV (human immunodeficiency virus) and hepatitis viruses Band C (HBV and HCV). It describes the background to premarital screening programmes and theirvalue in countries where these diseases are endemic. The use of premarital screening worldwide iscritically evaluated, including recent experiences in Saudi Arabia, followed by discussion of the

outcomes of such programmes. Despite its many benefits, premarital testing is not acceptable insome communities for various legal and religious reasons, and other educational and culturalfactors may prevent some married couples following the advice given by counsellors. The successof these programmes therefore depends on adequate religious support, government policy,education and counselling. In contrast to premarital screening for haemoglobinopathies, premaritalscreening for HIV and the hepatitis viruses is still highly controversial, both in terms of ethics andcost-effectiveness. In wealthy countries, premarital hepatitis and HIV testing could becomemandatory if at-risk, high-prevalence populations are clearly identified and all ethical issues areadequately addressed.

PREMARITAL TESTING FOR THALASSEMIA ANDSICKLE CELL DISEASE

Introduction

Preventive genetic services based on population screen-

ing are now an integral part of maternal and child

health programmes in many parts of the world.

Mass screening and genetic counselling have been carried

out widely, but they are not as effective as antenatal screening

programmes. New developments in DNA technology, ultra-

sound scanning and assaying maternal blood factors greatly

increase the potential for improving human health.1

The prevalence of inherited blood disorders in certain

parts of the world is high, including the autosomally inher-

ited haemoglobinopathies, thalassaemia and sickle celldisease. Premarital screening aims to identify carriers of

the haemoglobin disorders, in order to assess the risk of

having children with a severe form of disease. The couple

can then choose whether or not to have an affected child.

Improved healthcare and management means that the

numbers of thalassaemic patients and their life expectancy

are increasing, and this places extra demands on healthcare

systems, meaning that some countries are unable to deliver

optimum treatment to all their affected patients. Effective

prevention can maximize the available resources if it is insti-

tuted properly, preventing up to 95% of affected births.2

Healthy carriers of beta-thalassemia can be identified

inexpensively and accurately by a simple blood test.Couples who undergo testing can be informed about

genetic risks and given options for reducing risk, including

prenatal diagnosis.2

History of premarital screening for thalassaemiaand sickle cell disease

Premarital thalassaemia screening was first carried out in

1975 by Silvestroni and colleagues3 in Latium, Italy, as

part of a school prevention programme. Screening for

sickle cell anaemia began before this, in Virginia in 1970.4

Nationwide screening programmes also began in Canada,

Cyprus, Greece, Italy and the UK during the 1970s, with

proven success

5

(see Table 1). Until this point, the geneticcauses of hemoglobinopathy were understood, but little

had been done to prevent them in newborns.18

Global aspects of premarital screening programmes

Premarital testing programmes should also educate couples,

providing accurate and unbiased information. They must be

available to anyone who wants them and proper diagnostic

techniques must be used.19 Informed consent is necessary,

as well as guarantees of privacy and treatment for the

affected individuals. Premarital programmes are most suc-

cessful when social, religious, ethnic and cultural factors

are all addressed.2

22

Journal of Medical Screening 2009 Volume 16 Number 1 www.jmedscreen.com

7/29/2019 skreening

2/7

Angastiniotis and Modell20 classified countries who deliver

premarital screening programmes into three categories:

(1) Endemic Mediterranean countries in which preventive

programmes are long-established, with success rates

(preventive) of 80 100% and optimum treatment

via specialist clinics.

(2) Developed, industrialized countriesin which prevalence

is increasing because of migration; these countries can

fund screening programmes, but find it difficult to

reach immigrants with certain cultural backgrounds.

(3) Developing countries in which there are economic dif-

ficulties and other health priorities (e.g. infectiousdisease control), or other religious and cultural con-

straints20 (see later).

In Cyprus, Greece and Italy, premarital screening for tha-

lassemia has been normal practice for a long time because

consanguinity is high. Similar preventive programmes have

been introduced in Bahrain, China, India, the Islamic

Republic of Iran, Indonesia, Malaysia, the Maldives,

Singapore and Thailand, and recently in Saudi Arabia and

United Arab Emirates. In the UK, Northern Ireland and

other northwest European countries, prenatal diagnosis is

available and abortion is a prevention strategy.2

In China, couples who wish to marry are extensively

tested, including physical examination. They are given

premarital health instructions and counselling in the

form of watching videotapes of the type of child they

might conceive after which appropriate measures are

taken. This approach has been strongly criticized in terms

of human rights, control, oppression and eugenics, even

though the value of vigilant premarital screening is

acknowledged.21

In Lebanon, thalassaemia patients are managed in

chronic-care centres in collaboration with the ministries of

Social Affairs and Public Health. Their screening programme

includes providing information, training health pro-fessionals and developing training materials, with priority

given to disseminating knowledge and increasing public

awareness.22

Tosun et al.5 studied the premarital haemoglobinopathy

screening programmes in Mersin, Turkey, where consangui-

nity is 30%. If the man and the woman are both carriers,

results are given confidentially and they are counselled

about their options, including prenatal diagnosis.

In Saudi Arabia, premarital testing for haemoglobinopa-

thies is mandatory.9 The results of at-risk couples are

treated in the same way as in Turkey. Prenatal diagnosis is

not offered, however, as discussed later.9

Table1 Countries with known premarital screening programmes

Country Date started Type of screening Source

Italy 1975 Thalassaemia (mandatory) Silvestroni et al.3

Bahrain 1985 Thalassaemia and sickle cell disease (mandatory) Al-Arrayed6

Iran 1997 Thalassaemia (mandatory) Samavat and Modell7

Jordan 2004 Thalassaemia (mandatory) Hamamya et al.8

Saudi 2004 Thalassaemia and sickle cell disease (mandatory) AlHamdan et al.9

Arabia 2008 HIV, hepatitis B and hepatitis C (mandatory) Shalhoub10

United Arab 2007 Thalassaemia (mandatory) Al-Gazali et al.11Emirates

Tunisia Thalassaemia (mandatory) Therese12

Egypt Thalassaemia & STDs (voluntary) Therese12

Spain Thalassaemia & STDs (voluntary) Therese12

Portugal Thalassaemia & STDs (voluntary) Therese12

TurkeyMerlin 1998 Thalassaemia (mandatory) Keskina et al.13

Denizli 1995 Thalassaemia (mandatory Keskina et al.13

Cyprus 1973 Thalassaemia (mandatory) Angastiniotis14

Canada 1970s Thalassaemia, SCD & STDs (voluntary) Tosun et al.5

Greece 1975 Thalassaemia (mandatory) Tosun et al.5

UK 1970s Thalassaemia, SCD & STDs (voluntary) Tosun et al.5

USAIllinois & Louisiana 1983 STDs including HIV (mandatory), stopped CDC, MMWR15

China 1992 Inherited diseases, HBV & HIV (mandatory till 2003) Therese12

Taiwan 1993 Thalassaemia (Voluntary) Chern et al.16

Brazil Inherited & STDs (mandatory in some areas) Therese12

Palestine Thalassaemia (mandatory) Al-Gazali et al.11

MalaysiaJohor 2002 HIV (Mandatory) Khebir et al.17

India Inherited & STDs (voluntary) WHO Secretariat Report2

Indonesia Inherited & STDs (voluntary) WHO Secretariat Report2

Maldives Inherited & STDs (voluntary) WHO Secretariat Report2

Singapore Inherited & STDs (voluntary) WHO Secretariat Report2

Thailand Inherited & STDs (voluntary) WHO Secretariat Report2

Beta-Thalassaemia Unknown dateHIV, human immunodeficiency virus; SCD, sickle cell disease; STDs, sexually transmitted diseases

Premarital screening for haemoglobinopathies, HIV, HBV and HCV 23

www.jmedscreen.com Journal of Medical Screening 2009 Volume 16 Number 1

7/29/2019 skreening

3/7

Role of culture and education in the successof screening programmes

Consanguinity refers to relationships by blood or common

ancestry, in which the chances of offspring inheriting a

recessive allele for a disease are increased; the closer the

relationship, the greater the risk. Marriages between

members of the same tribe or extended family group are

favoured in some cultures, including those between first

cousins. Consanguineous marriages are uncommon in

Western countries. Marriage between first cousins is forbid-

den by the Orthodox Church and Roman Catholic Church,

and may be seen as incestuous in the United States.

Personal characteristics including socioeconomic status

have implications for the outcome of premarital screening

programmes. Education of the couples who are to be

screened is extremely important and it is essential to

educate all members of the screening team (laboratory tech-

nologists, nurse practitioners, physicians, counsellors, out-

reach workers and social workers). According to

Schmidt,23 sufficient planning in the educational area

before the first blood sample is drawn can avoid failures of

the programme. The meaning of the term carrier statusshould be made known to members of the public long

before they get married. For successful public education,

governments and government organizations must cooperate,

as well as community and religious leaders, school parent

organizations and health personnel.5

A study by Eshra and colleagues24based in Egypt revealed

gaps in knowledge regarding premarital screening, even

among educated people. These people acquired their knowl-

edge from the mass media and medical personnel. People

who responded to information about premarital screening

had favourable attitudes towards premarital counselling

and examination of consanguineous marriages, possibly

relating to social changes, declining illiteracy, increasing

economic pressures, increasing numbers of nuclear families

and longer waiting times before starting a family.24 People

with a negative attitude towards these tests were mostly

unmarried males. Eshra and colleagues24 therefore

suggested that education programmes about the benefits of

premarital examination should target unmarried males, so

they can make informed choices about unmarried females

and consanguineous marriages.

Religious beliefs restrictthe success of screeningprogrammes

in some communities. In Southern Iran, premarital screening

has been mandatory for 10 years, yet high-risk couples still

get married and give birth to children homozygous for beta-

thalassaemia. Often this is because of religious and traditional

cultural restraints25

; in the case of Islam, consanguineous mar-riages are permitted, so thalassemia persists in some parts of

the community, making the programme redundant.25

Some people believe that their fate is determined by God

and therefore accept the risk of having a sick child. A recent

report in The Jordan Times26 showed that many Jordanians

view the results of their unions as fate. One interviewee

stated: All my ten children are disabled; they will get their

reward in heaven. On the contrary, there are many teach-

ings in Islamic culture that promote healthy marriage and

the role of counselling.27

AlKhaldi et al.28 evaluated the attitude of health-science

students in Saudi Arabia towards premarital screening and

counselling. Most students had a positive attitude, but

around 25% refused testing and counselling according to

their interpretation of Islamic principles. Awatif29 studied

attitudes among female students in King Saud University,

discovering that 86% of them felt positively about premarital

testing. El-Hazmi30 assessed attitudes in a community-based

study and found 94% of participants considered premarital

testing and counselling to be important in preventing

genetic blood diseases; 87% thought testing should be man-datory. The Saudi community clearly shows awareness of

premarital testing and its value; however when AlHamdan

et al.9 studied the outcome of the first 2 years of the Saudi

screening programme, they found that about 90% of high-

risk couples still got married despite knowing their risk of

having a sick child. This undermines the high level of aware-

ness identified in other studies. One possible explanation is

that both AlKhaldi et al.28 and Awatif29 focused on the

opinions of university students and El-Hazmis community

study30 was among university students and people attending

scientific meetings and health centres. None of these studies

was truly representative of the Saudi population as a whole

and therefore the results cannot be generalized.

Reports by Karimi et al.,25 Monaghan26 and AlKhaldi et al.28

were from three different Islamic countries, and all three pro-

vided evidence that religious beliefs could be obstacles to the

success of premarital screening programmes, regardless of

other factors such as education level. The same conclusions

were reported long ago in other (non-Muslim) communities.

In 1981, Angastiniotis and Hadjiminas14 stated that support

from the Church was the main reason for the success of screen-

ing programmes in Cyprus and Greece.

Counselling

Genetic counselling is the process by which an individual or

a family obtains information about a genetic condition that

may affect them, so that they can make appropriate decisions

about marriage, reproduction and health management.27

Genetic counselling protects the autonomy of the couple,

fulfilling their right to be fully informed about the disorder

and all available options.2 Although premarital tests for hae-

moglobinopathies are reliable and useful, not everyone with

these genes responds to counselling. Neal-Cooper and Scott4

reported that young couples concerns about producing a

child with sickle cell disease are often offset by their strong

desire to have children regardless of risk. The researchers

suggested that at-risk couples should be contacted directly

by counsellors and encouraged to undertake education and

counselling.Prevention and treatment of genetic diseases is virtually

impossible.1 Studies of patient perspectives about premarital

examinations reveal a need for physicians to offer counsel-

ling for various health problems before the patient asks, so

they can turn down unwanted help rather bring up sensitive

issues.31 Screening programmes that inform about the risks

associated with child bearing should be performed well

before child-bearing age. Unfortunately, premarital screen-

ing often comes too late for couples to change their opinions

about marriage based on their haemoglobin phenotype,

because by this point they are already committed to their

relationship. Furthermore, it may be taboo for a woman

24 Alswaidi and OBrien


7/29/2019 skreening

4/7

to reject marriage for these reasons, and it may affect her

social life, preventing her from ever getting married.

One successful approach is solution-focused premarital

counselling. Murray and Murray32 discuss how this focuses

on a couples resources, helping them to develop a shared

vision for the marriage. Background information about pre-

marital counselling and solution-focusedtherapy provide a fra-

mework in which intervention strategies in those confirmed

with positive status for a disease can be developed. Thesesolution-oriented interventions include solution-oriented

questions and feedback, as well as a Couples Resource Map

(CRM) which depicts the support available to the couple

from various personal, relationship and contextual

resources.33 The available choices include avoidance of mar-

riage, reproductive options for those who proceed with the

marriage following prenatal diagnosis, adoption of the affected

child, donation of sperm, ova or a pre-embryo from an unaf-

fected individual, and pre-implantation diagnosis.26 Choosing

the best option depends on availability, cost, and local regu-

lations and religious rules. For example, in Saudi Arabia adop-

tion of children is prohibited on religious grounds and prenatal

diagnosis is useless because abortion is forbidden unless the

fetus is malformed. However, pre-implantation diagnosis ispermitted and affordable.

Thus the success of genetic counselling depends on the

approach adopted by the counsellor as well as the education

and attitude of the couple. Screening programmes must be

equitable, accessible and understood by the target popu-

lation, but most importantly they must comply with the pre-

vailing cultural, ethnic, economic and societal values.

Premarital testing in Saudi Arabia and otherArabian countries

Genetic and congenital disorders are common in Arabcountries, contributing greatly to infant mortality and mor-

bidity. Common among these diseases are the haemoglobi-

nopathies and glucose-6-phosphatase deficiency.11 In the

first half of the twentieth century, the governments of

countries like Egypt, Syrian Arab Republic, Lebanon,

Tunisia, and Morocco began promoting optional premarital

examinations. To begin with, there were no methods for

detecting disease carriers, so hereditary diseases and consan-

guinity were little affected. Medical certificates were often

provided without complete medical check-ups.34 As detec-

tion became possible, the burden of screening was taken

up by the Governments of Egypt, Lebanon, Bahrain, Saudi

Arabia and United Arab Emirates in order to establish appro-

priate screening techniques and policies.Premarital screening is essential for changing attitudes

towards consanguineous marriage35 particularly in places

where consanguineous and tribal marriages are common,

resulting in a high incidence of genetic disorders.36 Such

marriages are rare in Western societies, often restricted by

civil legislation and religious beliefs37 but it has been esti-

mated that 2560% of all marriages in Arab regions are con-

sanguineous,11 with a high incidence of first-cousin

marriage. In fact, marriage within the family is encouraged

in many parts of Asia and Africa and the east-Mediterranean

region, which is mainly occupied by Arabs and Muslims

for whom religious considerations are of paramount

importance.38 This is why it is so important to examine

the options for prevention and management of genetic dis-

orders and their ethical and (country)-policy-related

implications.

In 2004, the Saudi Arabian Government implemented

compulsory premarital screening aimed at decreasing the

incidence of haemoglobinopathies. It was implemented by

the Ministry of Health, which is responsible for providing

free health care to the entire population, and the decisionto make testing mandatory was based on discussions with

numerous technical, religious and social organizations.

Currently, there are over one hundred health reception

centres, 70 blood-testing laboratories and 20 genetic coun-

selling and education clinics in the country. Both screening

and counselling are free of charge. A specialist centre in

Riyadh, in association with King Faisal Specialist Hospital,

trains all the health personnel who work on the programme.

The carefully formulated guidelines are regularly updated.9

AlHamdan and colleagues9 assessed the premarital

screening programme two years after it became mandatory.

Everyone in Saudi Arabia had good access to the pro-

gramme. High prevalence of carrier status was reported pre-

dominantly in the eastern and south western regions of thecountry, but (as mentioned above) 90% of couples detected

as carriers did not follow the advice they were given and

went ahead with their marriages. This result requires evalu-

ation and revision of the programme by the Saudi health

authority in order to achieve its goals as AlHamdan said.

PREMARITAL SCREENING OF HIV, HBVAND HCV

Epidemiology of HIV, HBVand HCV

Currently, there are about 4.1 million people with HIV infec-

tion worldwide; 95% of them are in developing countries,generally in sub-Saharan Africa and Southeast Asia.39

Approximately 1.8 billion people have serologic evidence

of HBV infection and 350 million have a chronic infection.

At least 500,000 of them die of liver malignancy and cirrho-

sis.40 The World Health Organization (WHO) estimates 170

million people around the world are infected with HCV.41

Prevalence varies widely, with Egypt having the highest of

22%. Healthy blood donors reveal infection rates of 0.01

0.02% in the UK and northern Europe, 11.5% in southern

Europe, and 6.5% in parts of equatorial Africa.41 According

to the Centres for Disease Control and Prevention, 1.8% of

the US population is positive for anti-HCV, with 8000

10,000 deaths each year caused by HCV infection.41

Unfortunately, information about the prevalence of thesediseases among the specific target groups is not available.

In 2004, the Saudi Ministry of Health announced the total

number of HIV carriers was about 11,000, of which 2005

were Saudis, giving a prevalence of about 0.011% for the

Saudi population (18 million). Estimates for the prevalence

of HBV and HCV in young Saudi adults are available, but not

specifically for the group targeted by screening programmes.

El-Hazmi42 found prevalence rates of 1.4% for hepatitis B

surface antigen (HBsAg) and 0.2% for anti-HCV among

Saudi blood donors in Riyadh, and prevalences of 2.0% and

1.6%, respectively, among non-Saudi blood donors. Another

study by Bashawri and colleagues43 found a steady decrease



7/29/2019 skreening

5/7

in HBsAg (from 2.58 to 1.67%) and antiHCV (from 1.04 to

0.59%) in the Eastern region among blood donors between

1998 and 2001. However, Saudi Arabia began mandatory pre-

marital screening for hepatitis B and C viruses and HIV in the

beginning of 2008.10 Adding these new tests to the Saudi man-

datory premarital screening programme means that about a

quarter of million individuals must undergo HIV, HBV and

HCV testing annually10, which is not cost-effective due to the

low prevalence of these diseases especially HIV. As a Saudicitizen, the author of this paper appreciates the rationale for

adding these new tests, namely the massive public and

media pressure on the government. At the time of writing,

however, the current programme has been running for less

than a year, and no formal reports have yet been released.

This programme will definitely enable the Saudi health auth-

ority to clearly estimate the epidemiologic indicators for these

infections or any other health problems among Saudis in the

future.

The need for premarital screening of HIV,HBVand HCV

Heterosexual sex and perinatal transmission can affect the

fetus, resulting in infections of the newborn. Newborns

infected with HIV will eventually develop AIDS (acquired

immunodeficiency syndrome). Although detection of HIV

in the mother and providing anti-HIV therapy is common,

success rates are unclear and there are financial and

medical constraints. In Belarus, Kazakhstan, the Republic

of Moldova, the Russian Federation and Ukraine, massive

outbreaks have been reported among injecting drug users.

Transmission of HIV to non-injecting sexual partners

occurs, as well as recipients of blood and other tissues,

thus increasing overall prevalence. Hepatitis viruses (HBV

and HCV) are also transmitted among drug users; in fact,

hepatitis epidemics among drug users do precede HIV infec-tion. Prevalence of HCV in injection drug users is far greater

than HIV, indicating that HCV has greater transmissibility via

blood.44

Perinatal hepatitis is not always symptomatic but there is a

high risk of infection becoming chronic, and there are only a

limited number of medications for treating HBV and

HCV infections. An effective vaccine for HBV is now avail-

able,45 forming an essential part of vaccination programmes

around the world.

These important infections are a heavy financial burden

for health services. In the US, annual costs associated

with the treatment of HCV infection alone exceed $600

million.

41

Evaluation of screening programmesfor HIV in various countries

Sexual and vertical (from mother to fetus) modes of trans-

mission of HIV are well known; therefore the WHO rec-

ommends voluntary screening programmes together with

counselling and education services in countries with high

HIV prevalence rates.44 Several studies have examined the

acceptability and benefits of these screening programmes,

revealing important issues, both negative4648 and posi-

tive17,49,50 as described below.

Negative aspects of the screening programmes

Mandatory premarital screening for these infections would

involve assessing many new couples each year, with huge

financial implications.46 Petersen and White48 evaluated

HIV seroprevalence premaritally in eight areas of the US;

with rate estimates of 0.4% in women and 0.1% in men.

These rates were much higher than those obtained by

routine tests among blood donors. They also found that

the number of marriage licenses issued was not greatly

affected, and concluded that mandatory premarital screen-

ing would be more expensive than other HIV prevention

programmes, and have a limited impact on the epidemic.

These findings concur with those of an earlier study46 in

which public education, counselling and discretionary

testing reduced the spread of HIV infection more effectively

than premarital screening. Petersen and White48 proposed

some more economical and effective alternative strategies:

testing HIV status in pregnant women and treating affected

fetuses, and increasing the availability of drug treatments

to high-risk groups like intravenous drug users.

Turnock and Kelly47 evaluated mandatory premarital HIV

testing in Illinois (there was only one other similar pro-gramme in the US, in Louisiana; both were discontinued

within 2 years).51 This enforcement generated many legal

concerns, not least regarding the infringement of fundamen-

tal liberty, the right to marry and the implications of involun-

tary withdrawal of blood.52 The study concluded that these

mandatory tests were not a cost-effective way to control

HIV infection; the cost of running the programme for 6

months was $2.5 million (or $312,000 per seropositive

person). The number of marriage licenses issued in Illinois

decreased by 22.5%, but the number of licenses issued to

Illinois residents in surrounding states increased significantly,

meaning some couples moved to other states to marry.53

Positive aspects of the screening programmes

Altman et al.50 conducted a study to determine the effective-

ness of premarital testing in New Jersey, USA. They found

that seroprevalence in unmarried couples was 0.55

0.62%, much more than other earlier estimates. Therefore

they recommended voluntary HIV-1 testing and counselling

for marriage applicants.

Some studies show mandatory premarital testing to be

cost-effective; in the US, McKay and Phillips49 predicted

savings of $70,000 to $127,000 for every case of HIV infec-

tion prevented. They found a statistically significant cost

benefit ratio of between 3.1 and 28.2 in many scenarios.

Khebir et al.17 evaluated a premarital screening pro-gramme in Johor State (Malaysia) over 3 years. They

reported a positivity rate of 0.17% for premarital screening

compared with a positivity rate of 0.05% for antenatal

screening. The number of marriage applications actually

increased and public awareness of HIV was raised, thus

improving the chances of early detection. This programme

uses a newer, rapid and cheap but highly sensitive and

specific screening test (SD Bioline HIV-1/2 3.0; StandardDiagnostics Inc. Kyonggi-do, South Korea) and the screen-

ing and confirmatory tests are free to the public.

Adibi et al.40 assessed the economics of preventing HBV

transmission in unmarried people in Iran, where cultural



7/29/2019 skreening

6/7

influences are strong and HBV infection is endemic. They

reported that premarital HBV testing is cost effective.

Factors influencing the success of screeningprogrammes for HIV, HBVand HCV

Although the prevalence of these infections seems to be the

most important factor when implementing screening pro-

grammes, the countrys resources, availability of medicalcare, education, and public awareness are also important.

Some international associations (e.g. Bill Clinton HIV

Initiative and the United Nations AIDS programme) have

suggested that HIV screening should be mandatory in

countries with prevalence of 5% or more.54

In regions where the prevalence of HIV, HBV and HCV is

high, knowledge about the diseases and uptake of voluntary

counselling and testing is low.55 This is probably because

these infection rates are greater in developing and under-

developed countries where literacy and levels of understand-

ing are low. Culture and individual attitudes also have a role

in the success of testing.5557 Iliyasu et al.55 reported that

knowledge of HIV in Nigeria is low, especially in rural

areas, even though it has the third highest population of

people living with HIV. Many Nigerians did not know the

cause of AIDS or the modes of transmission, and those

who knew about the disease rejected voluntary counselling

and testing because of misconceptions and fear, gaps in

knowledge and limited access to the services. Formal edu-

cation, female gender and HIV knowledge predicted a posi-

tive attitude.

The impact of culture cannot be underestimated.

Luginaah et al.56 reported that HIV testing has a far-reaching

social impact, especially for people planning to marry, which

extends beyond individuals and couples in certain commu-

nities where values may clash with the concept of premarital

HIV testing and there are issues of confidentiality.Other than Saudi Arabia, only China implements manda-

tory premarital testing for HBV and this is because the preva-

lence of HBsAg carriers is high (10%).12 Mandatory

premarital screening for HCV is only reported in Saudi

Arabia as well.10

Routine testing for the hepatitis viruses and HIV is under-

taken by many countries, but usually before blood donation,

before surgical procedures, in people who are admitted to

hospital and in prisoners. Mandatory pre-military recruit-

ment and pre-employment screening are now common.

When Adibi et al.57 evaluated the attitudes of young adults

in Iran towards premarital HBV screening, male sex and

higher education level were associated with more positive

attitudes. They inferred that a universal premarital HBV

screening programme would be highly acceptable in Iran.

CONCLUSION

Thalassemia and sickle cell disease are common, incurable,

autosomal recessive inheritable haemoglobinopathies that

cause significant morbidity and mortality and impose a

heavy financial burden on society. A simple blood test

before marriage can easily detect carriers of these diseases,

to inform couples about their chances of producing affected

children and ensure they receive appropriate advice. Since

their introduction in the early 1970s, some premarital

screening programmes have become widely accepted and

highly valued in preventive healthcare, so much so that

many countries have made them mandatory. Their value

to public health is widely acknowledged.

Yet, not all screening programmes have shared this degree

of success. Some very strong social factors influence the

acceptability of preventive programmes, not least among

them religious beliefs, cultural norms, traditions, literacyand education level, government policies and the attitudes

of individual couples. For mandatory infection screening

programmes to be successful, every one of these factors

needs to be addressed. Experiences from some Islamic

countries indicate that the way in which some individuals

misinterpret their religion creates a significant obstacle to

the success of screening programmes in Muslim communities.

HIV and hepatitis infections are now prevalent in epi-

demic proportions and are easily transmitted to sexual part-

ners and to newborns. They are not curable, and mortality

and morbidity rates are high. For these reasons alone, they

are strong candidates for inclusion in premarital screening

programmes. Currently, routine screening for these import-

ant viral diseases is mainly conducted among blood andtissue donors. The situation is only changing slowly. China

and Saudi Arabia have started premarital screening for

HBV and Iran is considering including it as part of its own

premarital screening programme. Mandatory premarital

screening for HIV is a different issue altogether. It has been

tried in some countries, such as the USA, Malaysia and

Saudi Arabia, but with very limited success in USA.

Enforcement is still highly controversial, and raises serious

ethical and cost-effectiveness issues. More outcome data from

Malaysia and Saudi Arabia, among other countries, will do

much to increase the body of evidence on these matters.

In developed and committed countries, mandatory

premarital screening does have the potential to succeed aslong as the target population is clearly identified and all

ethical issues (including confidentiality of the results),

religious, cultural and human rights and concerns about

proper post-diagnostic management are fully addressed.

. . . . . . . . . . . . . . .Authors affiliationsFahad M Alswaidi, Epidemiology PhD student, The University ofManchester, School of Translational Medicine, Occupational andEnvironmental Health Research Group Stopford Building, OxfordRoad, M13 9PT, UKSarah J OBrien, Professor of Health Sciences and Epidemiology/Honorary Consultant, The University of Manchester, School ofTranslational Medicine, Occupational and Environmental Health

Research Group, Stopford Building, Oxford Road, M13 9PT, UK

ACKNOWLEDGEMENTS

We are grateful to the journals reviewers for their valuable

comments which guided the revision of the manuscript.

REFERENCES

1 Kuliev AM, Modell B. Problems in the control of genetic disorders. BiomedSci1990;1:317



7/29/2019 skreening

7/7

2 WHO Secretariat Report. Thalassemia and other hemoglobinopathies.Provisional agenda item 5.2, EB 118(5). Geneva: World HealthOrganization 2006

3 Silvestroni E, Bianco I, Graziani B, Carboni C, DArca SU. First premaritalscreening of thalassaemia carriers in intermediate schools in Latium.

J Med Genet1978;15:20274 Neal-Cooper F, Scott RB. Genetic counselling in sickle cell anemia:

experiences with couples at risk. Public Health Rep 1988:103:17485 Tosun F, Bilgin A, Kizilok A. Five-year evaluation of premarital screening

program for hemoglobinopathies in the province of Mersin, Turkey.Turk J Hematol 2006;23:8489

6 Al-Arrayed SS. Review of the spectrum of genetic diseases in Bahrain.Eastern Mediterranean Health Journal 1999:5:11141207 Samavat A, Modell B. (2004). Iranian national thalassaemia screening

programme. BMJ329:113411378 Hamamya H, Al-Haitb S, Alwanc A, Ajlounia K. Jordan: Communities and

community genetics. Commun Genet2007;10:52609 AlHamdan NA, AlMazrou YY, AlSwaidi FM, Choudary AJ. Premarital

screening for thalassemia and sickle cell disease in Saudi Arabia.Genet Med 2007;9:3727

10 Shalhoub L. Arab News 9 January 2008. Available at: http://www.arabnews.com/?page=1&section=0&article=105463&d=9&m=1&y=2008

11 Al-Gazali L, Hamamy H, Al-Arrayad S. Genetic disorders in the ArabWorld. BMJ2006;333:8314

12 Therese H. Getting married in China: Pass the medical first. BMJ2003;326:2779

13 Keskina A, Turk T, Polat A, Koyuncu H, Saracoglu B. Premarital screeningof beta-thalassemia trait in the province of Denizli, Turkey. Acta Haematol

2000;104:31314 Angastiniotis MA, Hadjiminas MG. Prevention of thalassaemia in Cyprus.Lancet1981;1:36971

15 Centres for Diseases Control and Prevention, MMWR. Perspectives inDisease Prevention and Health Promotion Public Health Service Guidelinesfor Counselling and Antibody Testing to Prevent HIV Infection and AIDS.August 14, 1987;36(31):50915. Retrieved on 23 November 2007from: http://www.cdc.gov/mmwr/preview/mmwrhtml/00015088.htm(last accessed November 2008)

16 Chern JP, Lin KH, Lu MY, et al. Beta-thalassemia major births after NationalScreening Program in Taiwan. Pediatr Blood Canc 2007;50:5861

17 Khebir BV, Adam MA, Daud AR, Shahrom CM. Premarital HIV screeningin Johor (2002 2004). Med J Malaysia 2007;62:1922

18 Naylor EW. Genetic screening and genetic counselling: knowledge,attitudes, and practices in two groups of family planning professionals.Soc Biol Winter 1975;22:30414

19 Schumm WR, West DR. Development of three new scales for assessingclients perspectives on premarital counselling. Psychol Rep

2002;88(3Pt2):1071420 Angastiniotis M, Modell B. Global epidemiology of hemoglobin disorders.Ann NY Acad Sci 1998;850:25169

21 Hesketh T. Getting married in China: pass the medical first. BMJ2003;326:2779

22 Inati A, Zeineh N, Ismaeel H, et al. Beta-thalassemia: the Lebaneseexperience. Clin Lab2006;28:21727

23 Schmidt RM. Hemoglobinopathy screening: approaches to diagnosis,education and counselling. Am J Publ Hlth 1974;64:799804

24 Eshra DK, Dorgham LS, el-Sherbini AF. Knowledge and attitudes towardspremarital counselling and examination. J Egypt Publ Hlth Assoc1989;64(1/2):115

25 Karimi M, Jamalian N, Yarmohammadi H, Askarnejad A, Afrasiabi A,Hashemi A. Premarital screening for beta-thalassaemia in Southern Iran:options for improving the programme. J Med Screen 2007;14:626

26 Monaghan S. Genetics: For better or for worse. Middle East Health2007:1926. Available at: http://216.230.204.101/mehealth/sep03_article1.pdf (last accessed November 2008)

27 Albar MA. Counselling about genetic disease: an Islamic perspective. EastMediterr Hlth J 1999;5:11293328 AlKhaldi YM, Al-Sharif AI, Sadiq AA, Ziady HH. Attitudes to premarital

counselling among students of Abha Health Sciences College.Saudi Med J (Aug 2002);23:98690

29 Awatif A. Perception of female students of King Saud University towardspremarital screening. J Fam Commun Med 2006;13:838

30 El-Hazmi MA. Pre-marital examination as a method of prevention fromblood genetic disorders. Community views. Saudi Med J2006;27:12915

31 Schmitt EP. The premarital exam: a patient perspective. Fam Pract Res J1990;10:13341

32 Murray CE, Murray Jr, TL Solution-focused premarital counselling: helpingcouples build a vision for their marriage. J Marital Fam Ther2004;30:34958

33 Christine EM. Couples Resource Map Scales study. University of NorthCarolina (USA). Available at: http://www.couplesresourcemap.org /(last accessed November 2008)

34 World Health Organization. Hereditary anaemia: genetic basis, clinicalfeatures, diagnosis and treatment. Bull Wrld Hlth Org 1982;60:64360

35 Abdel-Meguid N, Zaki MS, Hammad SA. Premarital geneticinvestigations: effect of genetic counselling. East Mediterr Hlth J2000;6:65260

36 Al-Odaib AN, Abu-Amero KK, Ozand PT, Al-Hellani AM. A new era forpreventive genetic programs in the Arabian Peninsula. Saudi Med J2003;24:116875

37 Port KE, Mountain H, Nelson J, Bittles AH. Changing profile of couplesseeking genetic counselling for consanguinity in Australia. Am J MedGenet A 2005;132:15963

38 Albar MA. Ethical considerations in the prevention and management ofgenetic disorders with special emphasis on religious considerations.Saudi Med J2002;23:62732

39 Dubin J. HIV infection and AIDS. Available at: http://www.emedicine.com/emerg/topic253.htm (last accessed November 2008)

40 Adibi P, Rezailashkajani M, Roshandel D. An economic analysis ofpremarriage prevention of hepatitis B transmission in Iran. BMC Infect Dis2004;4:31

41 Mukherjee S, Dhawan VK. Hepatitis C. Available at: http://www.emedicine.com/med/topic993.htm (last accessed November 2008)42 El-Hazmi MM. Prevalence of HBV, HCV, HIV-1/ 2 and HTLV-I/II infections

among blood donors in teaching hospitals in the central region of SaudiArabia. Saudi Med J2004;25:2633

43 Bashawri LA, Fawaz NA, Ahmad MS, Qadi AA, Almawi WY. Prevalenceof seromarkers of HBV and HCV among blood donors in eastern SaudiArabia, 19982001. Clin Lab Haematol 2004;26:2258

44 World Health Organization. Workshop on quality assurance of HIV andhepatitis testing. Kiev, Ukraine, 2426 September 2003

45 World Health Organization. Hepatitis B Factsheet. Available at: http://www.who.int/mediacentre/factsheets/fs204/en/ (last accessedNovember 2008)

46 Cleary PD, Barry MJ, Mayer KH, et al. Compulsory premarital screeningfor the human immunodeficiency virus. Technical and public healthconsiderations. J Am Med Assoc1987;258:1757

47 Turnock BJ, Kelly CJ. Mandatory premarital testing for humanimmunodeficiency virus. The Illinois experience. J Am Med Assoc1989;261:34158

48 Petersen LR, White CR. Premarital screening for antibodies to humanimmunodeficiency virus type 1 in the United States. The PremaritalScreening Study Group. Am J Publ Hlth 1990:80:108790

49 McKay NL, Phillips KM. An economic evaluation of mandatory premaritaltesting for HIV. Inquiry1991:28:23648

50 Altman R, Shahied SI, Pizzuti W, Brandon DN, Anderson L, Freund C.Premarital HIV-1 testing in New Jersey. J Acq Immun Defic Synd1992;5:711

51 McKillip J. The effect of mandatory premarital HIV testing on marriage: Thecase of Illinois. Am J Publ Hlth 1991;81:65053

52 Lisko EA. Mandatory premarital HIV testing. Health Law and PolicyInstitute. Available at: http://www.law.uh.edu/healthlaw/perspectives/HIVAIDS/990226Premarital.html (last accessed November 2008)

53 Wilkerson I. Illinois legislature repeals requirement for Prenuptial AIDStests. The New York Times National Sunday June 25, 1989

54 Editorial. HIV: Compulsory testing and falling incidence? Lancet2006;367:1118

55 Iliyasu Z, Abubakar IS, Kabir M, Aliyu MH. Knowledge of HIV/AIDS and

attitude towards voluntary counselling and testing among adults.J Natl Med Assoc 2006;98:19172256 Luginaah IN, Yiridoe EK, Taabazuing MM. From mandatory to voluntary

testing: balancing human rights, religious and cultural values, and HIV/AIDS prevention in Ghana. Soc Sci Med2006;61:1689700

57 Adibi P, Saeid H, Massod M. Attitudes towards premarital screening forhepatitis B virus infection in Iran. J Med Screen 2007;14:435



skreening

Documents