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

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Population Health Genomics in Member Countries of the Cooperation Council for the Arab...
September 2009
about Islamic regulation pertaining to marriage
and genetic diseases, and on condition of absolute
respect for client confidentiality [34,40,41] .
Neonatal screening also is encouraged by Islam, since
it is aimed at minimizing the adverse effects of genetic
diseases that are highly prevalent in Islamic countries,
especially those related to hemoglobinopathies, which
have a high reported prevalence in several countries,
such as Saudi Arabia [40,41] .
Abortion is allowed in Islam if the fetus is grossly
malformed with an untreatable, severe condition
as demonstrated by medical investigation and
agreed upon by a committee formed by competent,
trustworthy physicians, and provided that abortion
is requested by the parents and the fetus is less than
120 days old (as calculated from conception, which
is reckoned as having occurred 14 days after the last
menstrual period, i.e., a total of 134 days from the
last menstrual period) [39–41].
PUBLIC UNDERSTANDING OF ISLAM
IN RELATION TO POPULATION HEALTH
GENOMICS
A substantial proportion of parents of children
with hemoglobinopathies who responded to a survey
reported that they were unaware of the Islamic fatwa
– i.e., an Islamic religious ruling based in scholarly
opinion on a matter of Islamic law [42] – regarding
genetic diseases and, particularly, abortion regulations.
The acceptance of abortion was significantly increased
after clarification of the Islamic perspective and fatwa
education (p-value < 0.001) [35] .
In addition, a large proportion of parents surveyed
were against premarital medical counseling and
prenatal diagnosis because of a lack of awareness
of the religious fatwa [35] . Such misunderstanding
can reinforce the fear that attending a premarital
or genetic clinic may result in the cancellation of a
planned marriage or the termination of an existing
marriage. Also, concerns about the confidentiality of
family medical history can make such consultation
difficult to pursue, especially when genetic disease is
known to have occurred in the family [20,43,44] .
These findings indicate the need for a
comprehensive health promotion campaign to
clarify the options permissible within Islamic
bioethics that may help people to prevent genetic
diseases. The purpose and content of premarital
and genetic counseling should be explained in
detail. We believe that such a campaign would help
to improve the uptake of these services and to make
couples more comfortable with their decisions.
POLICY PERSPECTIVE
The perceived importance and impact of
genetic diseases have been demonstrated by the
establishment of government and non-government
non-profit organizations and centers throughout
the GCC countries (e.g., Saudi Arabia, [26] Bahrain, [45]
and the United Arab Emirates [37] .) Bahrain and
Saudi Arabia have made premarital genetic
consultation obligatory for each couple before
marriage; the other GCC countries support this
measure but have not made it mandatory [18,27,45] .
Newborn screening is conducted in all of the
GCC countries, but with some variation in the
number of conditions included in the screening
program. Some of the GCC countries have
national screening programs for 16 or more
diseases, while others include only two or three
diseases, such as congenital hypothyroidism and
phenylketonuria [8,9,15,16,18,19,26,46,47–51] .
Prenatal services for pregnant women are
available in all GCC countries. As a part of these
services, ultrasound diagnosis of fetal health status
is provided. Women with high-risk pregnancies
are referred to more specialized maternal-fetal
services. With regard to the Islamic perspective and
regulations regarding termination of a pregnancy
on grounds of fetal abnormality, such intervention
would be legally permissible only in Bahrain,
Kuwait, and Qatar. However, if the fetal condition
would affect the life or the physical or mental health
of the mother, then abortion is permitted in all of
the GCC countries, except Oman and the United
Arab Emirates, which allow abortion only to save
the life of the mother [52] .
The World Health Organization (WHO) has
acknowledged that the primary implementation
of some public health genetic health services
may be costly but will help narrow the inequities
between developed and developing countries with
respect to health [43] . Collaborative work involving
the private sectors of developed countries may be
of benefit [43,53] . On the other hand, several genetic
services available to the public are inexpensive and
can be integrated with general health care services
at different levels [28] .
POPULATION HEALTH GENOMICS IN THE
GCC COUNTRIES
To provide an overview of the epidemiology and
burden of genetic diseases and to take stock of genetic
health services devoted to reducing the burden of
genetic diseases in the GCC countries, we conducted
a review of all published literature available through
MEDLINE, Internet sites for government and
private sectors of the GCC countries, and reports
from other national and international organizations
such as the WHO, the United Nations and the US
Centers for Disease Control and Prevention. In this
review we made an effort to include the most recent