Aborting a malformed fetus: a debatable issue in saudi arabia.

Congenital anomalies contribute a significant proportion of infant morbidity and mortality, as well as fetal mortality. They are generally grouped into three major categories: structural/metabolic, congenital infections, and other conditions. The most prevalent conditions include congenital heart defects, orofacial clefts, Down syndrome, and neural tube defects. Several prenatal diagnostic procedures have been introduced, both cytogenetic (such as chorion biopsy, amniocentesis and funiculocentesis) and biophysical (ultrasound 2-D, 3-D and 4-D, ultrasonography with Doppler, etc.). Insufficient data are currently available from Saudi Arabia on the epidemiology of the lethal congenital abnormalities which should be a priority due to high rate of consanguineous marriages among first cousins and their association with congenital anomalies. In terms of consanguinity and birth defects, a significant positive association has been consistently demonstrated between consanguinity and morbidity, and congenital defects with a complex etiology appear to be both more prevalent in consanguineous families and have a greater likelihood of recurrence. A debate regarding aborting a malformed fetus still exists among the senior Islamic scholars in many of the Islamic countries. The progressive interpretations of Islam have resulted in laws allowing for early abortion on request in two countries; six others permit abortion on health grounds and three more also allow abortion in cases of rape or fetal impairment. In Saudi Arabia, efforts to legalize abortion in certain circumstances have been recently discussed among Senior Religious Scholars and specialized physicians to permit abortions in certain circumstances. In this mini-review we discuss the current debate regarding aborting a malformed fetus in Saudi Arabia with a focus on the Islamic perspective.

INTRODUCTION

Congenital anomalies contribute a significant proportion of infant morbidity and mortality, as well as fetal mortality. A congenital anomaly is defined as an abnormality of structure, function or body metabolism that is present at birth (even if not diagnosed until later in life) and results in physical or mental disability, or is fatal. They are generally grouped into three major categories: structural/metabolic, congenital infections, and other conditions.[1] Although no specific definition for lethal anomaly exists, most practitioners use it to refer to an infant with severe neurological compromise and structural anomalies that, if untreated, would cause death within a few months. Examples are Trisomy 13, Trisomy 18, and anencephaly.

The prevalence of birth defects is comparable all over the world. It affects around 3% in the United States, 2.5% in India, and 2-3% in the United Kingdom. The most prevalent conditions include congenital heart defects, orofacial clefts, Down syndrome, and neural tube defects.[2] On the other hand, population-based studies addressing the epidemiology of congenital malformation, demand for genetic services, and antenatal detection is largely lacking in developing countries.[3]

Advances in medical technology and the introduction of routine prenatal screening allow the diagnosis of various fetal malformations throughout pregnancy. To date, there are more than 4,000 known birth defects.[1]

Although making the diagnosis antenatally through recent advances in ultrasound and prenatal testing is important; providing information to make an informed decision of whether to continue or interrupt a pregnancy is quite crucial.[4]

Studies in Europe and North America show that termination rates following antenatal diagnosis of a malformation are common across these countries.[5] A review of 20 studies found overall termination rates of 92% for Down's syndrome, 64% for spina bifida, 84% for anencephaly, 72% for Turner syndrome, and 58% for Klinefelter syndrome.[6] Forty-five per cent of the world's countries permit abortion for fetal impairment, including 32% and 84% of developing and developed countries respectively.[7] Moreover, late termination of pregnancy for fetal abnormality is permitted on differing grounds in different countries, depending on the type of malformation, gestational age at diagnosis and abortion legislation.[57] The decision to terminate an affected fetus may be influenced by a variety of factors, such as the country's laws and health system, as well as the parental level of education, socioeconomic status, and religious and cultural beliefs.

The severity of structural anomalies directly correlated with abortion rates of anomalous fetuses. Furthermore, at similar degrees of severity, central nervous system anomalies were more likely to be terminated electively.[8]

In this mini-review, we discuss the current debate regarding aborting a malformed fetus in Saudi Arabia with a focus on the Islamic perspective.

THE CONCEPT OF THE FETUS IS A PERSON

People are different in their opinions toward the ethics and legality of abortion. One opinion is so restricted and considers abortion is equivalent to murder; therefore, there is no place for argument. The other opinion is convinced that a fetus is merely body tissue, and so a woman can do as she wishes, including the abortion of a late-term fetus. A third opinion understands that abortion is morally wrong, but it can be legally permitted in certain circumstances.

Once philosophy is taken in consideration, new creative ideas on the topic should be permitted such as new scientific thinking to explain observable facts that include examining the consequences and theoretical implications of a scientific explanation.

Many of the debates turn on the status of the fetus, as if would like to a fetus is a person?, and does a fetus have moral or legal rights? The simplest definition of a person may be “a member of the species homo sapiens, the human species.”[9]

Those who consider the fetus is not a person may allow terminating its life and might extend this definition to the newborn infant immediately after birth because the fetus before birth and the infant after birth are the same individual. Therefore, killing the fetus is killing an individual human being.

Others see the concept of a person does not suffice to settle the abortion issue, for the biological development of a human being is gradual. Jane English stated in one of her article[10] that whether a fetus is a person or not, abortion is justifiable early in pregnancy to avoid modest harms and seldom justifiable late in pregnancy except to avoid significant injury or death. She gave long and serious arguments for these positions.

Furthermore, is the abortion of a malformed fetus permissible or not? On one hand, we may want to insist that women carry malformed fetuses to term, because the danger to the woman is not present, and this is the only justification for abortion. However, there is another way of looking at this. Since abortion is not absolutely immoral as is infanticide, we can say that agreeing to carry a malformed fetus to term is also immoral, as since it is very expensive to raise a malformed child, society will pick up the tab. It is immoral for a person to act in a way that results in compelling society to help financially. It is immoral to accept charity if we have the opportunity to work and so avoid accepting charity. It is noble to give charity, but it is immoral to ignore reality and become dependent upon charity. In the case of the malformed fetus, we need to look at the broad picture and decide. Again, this is not the case for infanticide, which is immoral, with no mitigating circumstances.

The wide variety of laws throughout the world was written specifically to protect born human beings and their property. There is virtually no legal precedent for applying such laws to fetuses.[11] Even when abortion was illegal, it had a lesser punishment than for murder, and was often just a misdemeanor.

Fetuses are uniquely different from born human beings in major ways, which casts doubt on the claim that they can be classified as human beings. The most fundamental difference is that a fetus is totally dependent on a woman's body to survive. Some might argue that born human beings can be entirely dependent on other people too. Moreover, anybody can take care of a newborn infant as any disabled person,but only that pregnant woman can nurture her fetus.

The beneficence-based obligations to the fetus exist when the fetus is reliably expected later to become a child and subsequently to achieve independent moral status.[12] We therefore abandon these futile attempts to understand the fetus as a person in terms of independent moral status of the fetus and it can be presented for medical interventions, whether diagnostic or therapeutic, that reasonably can be expected to result in a greater balance of benefits over harms for the child or person the fetus can later become.

ACCURACY OF PRENATAL DIAGNOSIS OF A MALFORMED FETUS

Prenatal diagnosis uses various noninvasive and invasive techniques to determine the health of, the condition of, or any abnormality in an unborn fetus. In recent years several prenatal diagnostic procedures have been introduced, both cytogenetic (such as chorion biopsy, amniocentesis and funiculocentesis) and biophysical (ultrasound 2-D, 3-D and 4-D, ultrasonography with Doppler, etc.). In addition, the correlation between post mortem (structural) studies and the ultrasound view of fetal life (structure and function) has led to the development of a new way of approaching the fetus known as “functional morphology”.[13]

Ultrasound 2-D is commonly used as a screening tool in pregnant women to evaluate gestational age, as well as identify twins, fetal position, placental location, fetal growth, development, and movement, and any structural birth defects. The sensitivity of ultrasound in the detection of fetal anomalies is dependent on the prevalence of anomalies in a study population, the skill and experience of the sonographers, the gestational age at scanning, the definition of anomaly-major and minor, and the postnatal ascertainment of anomalies.

The prenatal ultrasound at 18-20 weeks can detect major structural anomalies in approximately 60% of such cases. In addition, it is recommended that ultrasound examination should be repeated (at a frequency depending on the anomaly) to assess the evolution of the anomaly and attempt to detect other anomalies not previously identified.[14] The Eurscan Study group[15] reviewed data from 20 registries of congenital malformations in 12 European countries were included in the study and they found around 50% of the recognized syndromes which are associated with major congenital anomalies (cardiac, renal, intestinal, limb defects, abdominal wall defects and oral clefts) can be detected prenatally by the anomaly scan. However, the detection rate varies with the type of syndrome and with the different countries’ policies of prenatal screening.

Accuracy of prenatal diagnosis in a tertiary fetal medicine unit is high. Parents and staff need to be aware that not all abnormalities will be detected prenatally, but inaccurate diagnosis is uncommon.[16]

Once a fetal structural anomaly is identified by 2-D ultrasound, the Genetics Committee of the Society of Obstetricians and Gynecologists of Canada[14] recommends that other imaging techniques such as fetal echocardiography, 3-D obstetrical ultrasound, ultrafast fetal MRI, and, occasionally, fetal X-ray and fetal CT scan (using a low-dose protocol) may be helpful in specific cases. Parental blood testing and invasive prenatal testing may also be required to clarify the diagnosis for a fetus with isolated or multiple structural anomalies.

Referral to the appropriate pediatric or surgical subspecialist(s) should be considered to provide the most accurate information possible concerning the anomaly or anomalies and the associated prognosis.

Furthermore, addition of information from an autopsy by a specialist pediatric pathologist provides important information that could change the estimated risk of recurrence. In a study by Boyd et al.[17] found the estimated risk of recurrence in 27% of cases and in 8% this was to a higher (one in four) risk. Due to limited resources and logistic difficulties perinatal pathology is not available in all hospitals and therefore regional services are needed to provide adequate quality and standard of care.

Information regarding the abnormal ultrasound findings should be delivered to women in a clear, sympathetic, and timely fashion, and in a supportive environment that ensures privacy. Clinical indicators for benchmarking need to be developed to highlight issues which may require further investigation.

REPORTS FROM SAUDI ARABIA

Insufficient data are currently available from Saudi Arabia on the epidemiology of the lethal congenital abnormalities which should be a priority due to high rate of consanguineous marriages among first cousins and their association with congenital anomalies. In terms of consanguinity and birth defects, a significant positive association has been consistently demonstrated between consanguinity and morbidity, and congenital defects with a complex etiology appear to be both more prevalent in consanguineous families and have a greater likelihood of recurrence.[18]

Georgy et al.[19] analyzed the lethal congenital abnormalities that caused perinatal and late neonatal deaths in the National Guard King Khalid Hospital, Saudi Arabia over a 7-year period. A total of 119 (103 perinatal and 16 late neonatal) deaths had lethal congenital abnormalities, including two sets of twins. The commonest congenital abnormalities affected the central nervous system (32%) followed by abnormalities in the cardiovascular system (13%) and the renal system (11%).

A survey of 195 perinatal deaths in the King Fahd Hospital, Al-Khobar, Saudi Arabia,[20] revealed a perinatal mortality rate of 160/1000 total births. Lethal malformations accounted for 24.1% of fetal deaths.

Bassuni W et al.[21] reviewed a total of 169 deaths in Asir region, Saudi Arabia and 30.8% of these deaths were due congenital malformation.

Furthermore, at King Abdulaziz University Hospital, Jeddah, Saudi Arabia, 5356 newborns were screened for congenital anomalies.[22] Of these, 147 (27.06/1000 live birth) and 13 (2.39/1000 birth) stillbirth had congenital anomalies. In all live births, incidences of major anomalies were 93.9% and minor were 6.1%. Mothers of 95.9% with congenital malformation were healthy, 3.4% were diabetic and 0.7% had cardiac malformation. In 38.8% of cases parents were consanguineous.

Recently, Sallout et al.[2] evaluated the antenatal prevalence of major congenital anomalies in King Fahad Medical City, Riyadh, Saudi Arabia. The prevalence of major congenital anomalies was 27.96 per 1000 pregnancies and the genitourinary system and cranial anomalies were the most common. Of the 217 patients diagnosed with anomalies, 71 (32.7%) had fetuses with complex anomalies and 146 (67.3%) had fetuses with isolated anomalies. The perinatal mortality rate was 34.9% (65/186), including all cases of intrauterine fetal and neonatal deaths. Authors did not report if these anomalies were confirmed post delivery at least by physical examination to assess accuracy of their antenatal detection.

MATERNAL PSYCHOSOCIAL DYSFUNCTION

The antenatal diagnosis of a fetal congenital abnormality provokes great anxiety for parents. Ensuring that they have adequate information is one of the key factors in minimizing distress and fear. A multidisciplinary approach should be adopted, in particular liaising with the health care professionals who will be involved in postnatal care of the infant.

The level of anxiety and depression vary according to the severity of anomalies and the gestational age at their discovery and termination. Kaasen et al,[23] assessed the social dysfunction and health perception utilizing the corresponding subscales of the general health questionnaire (GHQ-28). In addition, they assessed the psychological distress using the impact of events scale (IES-22), edinburgh postnatal depression scale (EPDS) and the anxiety and depression subscales of the GHQ-28. Fetal anomalies were classified according to severity and diagnostic or prognostic ambiguity at the time of assessment. They found the least severe anomalies with no diagnostic or prognostic ambiguity induced the lowest levels of IES intrusive distress (P=0.025). Women included after 22 weeks of gestation (24%) reported significantly higher GHQ distress than women included earlier in pregnancy (P=0.003). The study group had significantly higher levels of psychosocial distress than the comparison group on all psychometric endpoints.

As compared with 580 randomly chosen pregnant women without malformed offspring, 161 women with malformed offspring at the index pregnancy had a more frequent history of previous multiple offspring deaths and somewhat increased maternal age but were not different on social class, marital or cohabitation status or parity. As compared with demographically similar reproducing women (n=54) interviewed, malformation cases (n=98) reported having had significantly more strong stress before identification of the malformation, as well as a clear tendency toward less appropriate timing of the pregnancy. Women with malformed offspring represent a psychosocially vulnerable group and should receive special clinical and personal support.

THE DECISION OF THE SAUDI COUNCIL OF SENIOR SCHOLARS

An understanding of variations in Muslim beliefs and practices, and the interplay between politics, religion, history and reproductive rights is the key to understanding abortion in different Muslim societies. Important efforts, including progressive interpretations of Islam, have resulted in laws allowing for early abortion on request in two countries; six others permit abortion on health grounds and three more also allow abortion in cases of rape or fetal impairment. However, medical and social factors limit access to safe abortion services in almost all the Muslim countries.[24]

All schools of Muslim law accept that abortion is permitted if continuing the pregnancy would put the mother's life in real danger. This is the only reason accepted for abortion after 19 weeks of gestation. The Qur’an makes it clear that a fetus must not be aborted because the family fears that they will not be able to provide for it - they should trust Allah to look after things: “Kill not your offspring for fear of poverty; it is we who provide for them and for you. Surely, killing them is a great sin.” Qur’an 17:32

Widely quoted is a resolution of the Islamic jurisprudence council of Mekkah (the Islamic World League) passing a Fatwa in its 12th session held in February 1990. This allowed abortion if the fetus was: grossly malformed with untreatable severe condition [Table 1] proved by medical investigations and decided 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 (19 weeks of gestation) computed from moment of conception.

Table 1

Lethal fetal anomalies

In Saudi Arabia, efforts to legalize abortion in certain circumstances have been recently discussed among Senior Religious Scholars and specialized physicians to permit abortions in certain circumstances. The Council of Senior Scholars issued a legal opinion (Fatwa-240) on this subject on 16 January 2011, and based on the two verses from the Holy Quran: (But whoever is forced [by necessity], neither desiring [it] nor transgressing [its limit], there is no sin upon him. Indeed, Allah is Forgiving and Merciful). (Al-Baqara-173) and (He has chosen you and has not placed upon you in the religion any difficulty) (Al-Hajj-78), The legal opinion came up with the following items:

It is permissible to abort a malformed fetus after 120 days of conception (19 weeks of gestation) (when the soul joins its body) if the continuation of pregnancy is expected to result in the death of its mother

It is permissible to abort a malformed fetus before 120 days of conception, if its death is expected following delivery, or if the fetus has severe disabilities that cannot be cured

The fetus can be aborted at any stage of pregnancy, if its death is medically confirmed in the womb of its mother

In all circumstance, it is not permissible to abort a fetus without a medical report from a specialized and trustworthy committee that is composed of at least three physicians, after obtaining a written consent from parents or the mother alone if the continuation of pregnancy is affecting her health. The consent can be obtained by the delegates of parents, if they cannot give it for any reason. The signed consent must be kept in the medical record of the mother.

CONCLUSIONS

The Islamic opinion of aborting a malformed fetus did not change much over decades regarding the timing of abortion; however, this legal opinion of the Council of Senior Scholars in Saudi Arabia gives some directions to physicians who will be morally comfortable in taking the decision to abort a malformed fetus.

There is a critical paucity of available data regarding the epidemiology of congenital malformations in Saudi Arabia. This subject shall be a national research priority due to the high rates of consanguineous marriages. Data when available will definitely augment decision makers and religious leaders provide an informed decision and allocate resources to address this matter in a scientific manner.