Schneider Children's Medical Center and Clalit Health Service | Israel
Lutfi A. Jaber is one of the foremost experts in the field of consanguinity and the problems associated with consanguineous marriages. This is still a major problem in many countries in the Middle East and Asia and Professor Jaber has studied it intensively and written many articles about the issue. As a pediatrician who is Director of a busy pediatric clinic in a large Arab town in Israel and who also works in the Department of Neurology at a large tertiary children’s hospital, he sees first-hand every day the consequences of these marriages as the various illnesses among the children he treats. He is also a Professor in the Sackler Faculty of Medicine, Tel Aviv University, Israel. By teaming up with colleagues in the Department of Genetics at a local tertiary medical centre, he also contributes to on-going research into the genetic conditions that result from consanguineous marriages.
Statement of the Problem: The risk among children of first-cousin parents for severe congenital malformations and genetic diseases is 2.7 times higher than that of children born to unrelated parents. To reduce the number of babies born with these conditions, in addition to reducing the rate of consanguineous marriages an important factor is the willingness of families to agree to termination of pregnancy (TOP) when prenatal tests have established beyond doubt that the foetus is affected.
The purpose of this study is investigating the attitudes of Israeli Arab women with children with severe congenital defects to prenatal testing and termination in future pregnancies and the impact of inclusion of a Moslem cleric or physician on the decision-making process.
Methodology & Theoretical Orientation: We investigated how many of 250 women (50% in consanguineous marriages) with babies with severe congenital anomalies had undergone prenatal testing and how many had refused recommended TOP; ascertained why they refused TOP, and investigated whether they would have changed their decision had they been able to talk to a Moslem cleric or a Moslem doctor.
Findings: The main recommended tests that were done are carriers of thalassemia, late ultrasound, triple test and early ultrasound. Thirty-five percent refused to consider TOP at all, 22% agreed, and 35% agreed provided it was carried out prior to 120 days gestation. Of those who refused, 50% did so on religious grounds and in 30% the reason was unclear. When we asked those who had refused whether the addition of a Moslem religious cleric to the committee would cause them to change their opinion, 46% said it would, but only 28% said they would change their mind if a senior Moslem physician were added.
Conclusion & Significance: Severe congenital anomalies resulting from consanguinity continue to cause major problems and additional strategies are required to reduce these.
- Al-Matary Abdulrahman and Jaffar Ali (2014) Controversies and considerations regarding the termination of pregnancy for Foetal Anomalies in Islam. BMC Medical Ethics Feb 5;15: 10.
- Jaber Lutfi and Halpern Gabrielle J. (2014) Consanguinity – its Impact, Consequences and Management. Bentham e Books.
- Gitsels-van der Wal JT, Manniën J, Gitsels LA, Reinders HS, Verhoeven PS, Ghaly MM, Klomp T, Hutton EK. (2014) Prenatal screening for congenital anomalies: exploring midwives' perceptions of counseling clients with religious backgrounds. BMC Pregnancy Childbirth Jul 19 ;14:237.
- Basel-Vanagaite, L., Taub, E., Halpern, G.J., et al. (2007)Genetic screening for autosomal recessive nonsyndromic mental retardation in an isolated population in Israel.European Journal of Human Genetics, 15, 250-253.
- Ahmed S. , Atkin K., Hewison J., et al. (2006) The influence of faith and religion and the role of religious andcommunity leaders in prenatal decisions for sickle celldisorders and thalassaemia major. Prenatal Diagnosis, 26, 801-809.