1. Charles Darwin & Emma Wedgewood: A Cousin Couple “ When the principles of breeding and of inheritance are better understood, we shall not hear ignorant members of our legislature rejecting with scorn a plan for ascertaining by an easy method whether or not consanguineous marriages are injurious to man.” ~ Charles Darwin (1871) ~

2. Attitudes of 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 Lutfi Jaber, M.D. The Bridge to Peace Community Pediatric Center, Taibe; Neurology Clinic, Schneider Children’s Medical Center of Israel, Petah Tikva; Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv;

3. Introduction Congenital malformations and various genetic disorders are common and affect 3% - 5% of all newborns. Children born to first-cousin parents have a 2.4 to 2.7-fold higher risk of major malformations. Jaberetal. L Am J Med Genet.1992 Sep 1;44(1):1-6.

4. “Consanguineous Matings in an Israeli Arab Community” In 1994 the rate of consanguineous marriages in the Israeli Arab community was 44%, and of these, over 23% of marriages were between first cousins or double-first cousins. JaberL, et al. Arch PediatAdolesc Med. 1994 Apr;148(4):4125.

5. infant mortality has fallen among all segments of the population. The overall infant mortality is below the mean of OECD countries. Rubin L. Lancet, May 2017

6. Cause-specific infant mortality, by population groups, 2009–11

7. Congenital malformations are a direct result of the high incidence of consanguineous marriages. • The incidence of congenital malformations and Mendelian disease paralleled the differences in consanguinity rates between the two populations. Jaber L. et al, 1992 Zlotogora et al. 2003

8. Next step.. The distribution of genetic disorders among the Arab population is not uniform. A great effort has been invested to characterizing disease-causing mutations in distinct populations.

9. Arthrogryposis Jaber L, et al.Am J Med Genet.1995 E Reinstein, et al. Mutations in ERGIC1. Clin Genet. 2017 Mar 19.

10. Deafness, Jaber L, et al., Am J Med Genet. 1992

11. HbTaybe (a38 or 39 THR Deleted)Galacteros F, … Jaber L, et al. CR AcadSci (Paris) 1994;317

12. Once severe genetic disease is discovered, termination of pregnancy is the solution. • It is difficult decision. • According to Moslem prophetic tradition, the fetus becomes “ensouled” at 120 days gestation. abortion after 120 days is considered a criminal offense.

13. The aims of this study were: • 1) To determine the percentage of women who gave birth of severely affected babies. • 2) To assess the percentage of mothers of children with severe congenital anomalies who had refused termination of pregnancy (TOP). • 3) To ascertain why those, chose to continue their pregnancies. • 4) To discuss with the women what their attitudes towards prenatal testing and TOP would be in future pregnancies.

14. Aims (cont) • 5)To investigate whether those women with severely affected fetuses who refused TOP may change their attitude after recommendation of either a Moslem cleric or a Moslem physician in addition to the regular personnel.

15. Significance of the study assist us in designing a program of prenatal testing and counseling that is acceptable to Arab Moslem women and their families.

16. Methods • We used Cross sectional study. • The study comprised 250 Moslem families of severely affected hospitalized children and prescribed by pre-structured questionnaire. • demographic details were obtained and whether they undergone prenatal tests.

17. Methods (cont) • The women were then questioned regarding their attitudes when informed that because the fetus was severely affected, TOP was strongly recommended, and discussed with those who refused termination why they had done so.

18. Methods (cont) • Finally, the women were asked whether, if they had been given the opportunity to discuss the situation either with a Moslem cleric or Moslem physician, they may change their minds and agreed to TOP.

19. Results

20. Number (%) of women who underwent the recommended prenatal tests. Test Number (%) who performed test Carrier screening for thalassemia 250 (100) Early ultrasound examination 202 (81) Triple test 203 (81) Late ultrasound examination 235 (94) Carrier screening for common genetic diseases apart from thalassemia 0*

21. Attitudes of the Women Regarding TOP in Future Pregnancies 55 (22%)Agreed to TOP Agreed to TOP at less than 120 days 87 (35%) Refused TOP 87 (35%) 8 (8%)Undecided 250 (100)Total

22. Attitudes of women according to different characteristics • There were no differences in the attitudes of the women regarding TOP according to almost the whole demographic characteristic. • Association was found between those women who agreed to perform the triple test, those who were willing to undergo TOP at any stage of gestation or underwent US examinations.

23. The main reasons for refusal to terminate a pregnancy

24. The effect of a Moslem cleric or physician on the decision making process to undergo TOP

25. Recommendations for reducing congenital malf. and IMR in Arabs. • Further strategies should be considered in order to reduce even more the frequency of consanguineous marriages. • Genetic testing for specific condition in family. • Identification of the gene(s) and mutations to conduct the counseling and blood-drawing sessions within the villages. • Preimplantation genetic diagnosis • A Moslem cleric inHospital Committees for TOP ? • Test during pregnancy: CVS, nuchal T, TT, amnio.