Skip to main content
Log in

Acceptability of prenatal testing and termination of pregnancy in Pakistan

  • Original Article
  • Published:
Journal of Community Genetics Aims and scope Submit manuscript

Abstract

This study aimed to assess acceptability of prenatal testing (PNT) and termination of pregnancy (TOP) for a range of conditions in Pakistani parents with and without a child with a genetic condition. A structured questionnaire assessing acceptability of PNT and TOP for 30 conditions was completed by 400 Pakistani participants: 200 parents with a child with a genetic condition (100 fathers and 100 mothers) and 200 parents without an affected child (100 fathers and 100 mothers). There was a high level of interest in PNT, where over 80 % of parents in all four study groups would want PNT for the majority of the conditions. There was comparatively less interest in TOP for the same conditions (ranging from 5 to 70 % of parents, with mothers of an affected child being most interested). Parents were most likely to be interested in TOP for conditions at the serious end of the continuum. More than half of the participants in each group would consider TOP for anencephaly and quadriplegia. The interest in PNT and TOP for a range of conditions suggests that rapidly developing PNT technologies are likely to be acceptable in Pakistan, a low-middle income level and Muslim country. The comparatively lower level of interest in TOP for the same conditions highlights ethical dilemmas that such technologies are likely to raise.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2

Similar content being viewed by others

References

  • Ahmed T (1995) The population of persons with disabilities in Pakistan. Asia Pac Popul J 10:39–62

    CAS  PubMed  Google Scholar 

  • Ahmed S, Saleem M, Sultana N, Raashid Y, Waqar A, Anwar M, Modell B, Karamat KA, Petrou M (2000) Prenatal diagnosis of beta-thalassaemia in Pakistan: experience in a Muslim country. Prenat Diagn 20:378–383

    Article  CAS  PubMed  Google Scholar 

  • Ahmed S, Atkin K, Hewison J, Green J (2006) The influence of faith and religion and the role of religious and community leaders in prenatal decisions for sickle cell disorders and thalassaemia major. Prenat Diagn 26:801–809

    Article  PubMed  Google Scholar 

  • Ahmed S, Hewison J, Green JM, Cuckle HS, Hirst J, Thornton JG (2008) Decisions about testing and termination of pregnancy for different fetal conditions: a qualitative study of European White and Pakistani mothers of affected children. J Genet Couns 17:560–572

    Article  PubMed  Google Scholar 

  • Ahmed S, Ahmed M, Sharif SM, Sheridan E, Taylor GR (2012) Attitudes towards prenatal testing and termination of pregnancy in British Pakistani parents and relatives of children with recessive conditions in the UK. Prenat Diagn 32:954–959

    Article  CAS  PubMed  Google Scholar 

  • Ahmed S, Bryant LD, Ahmed M, Jafri H, Raashid Y (2013) Experiences of parents with a child with Down syndrome in Pakistan and their views on termination of pregnancy. J Community Genet 4:107–114

    Article  PubMed Central  PubMed  Google Scholar 

  • Alsulaiman A, Hewison J (2007) Attitudes to prenatal testing and termination of pregnancy in Saudi Arabia. Community Genet 10:169–173

    Article  PubMed  Google Scholar 

  • Arif MO, Fatmi Z, Pardeep B, Ali T, Iqbal H, Bangash HK, Pervaiz R, Altaf H, Baba JA (2008) Attitudes and perceptions about prenatal diagnosis and induced abortion among adults of Pakistani population. Prenat Diagn 28:1149–1155

    Article  PubMed  Google Scholar 

  • Atkin K, Ahmad WI (2000) Family care-giving and chronic illness: how parents cope with a child with a sickle cell disorder or thalassaemia. Health Soc Care Community 8:57–69

    Article  PubMed  Google Scholar 

  • Babay ZA (2004) Attitudes of a high-risk group of pregnant Saudi Arabian women to prenatal screening for chromosomal anomalies. East Mediterr Health J 10:522–527

    CAS  PubMed  Google Scholar 

  • Baig SM, Azhar A, Hassan H, Baig JM, Aslam M, Ud Din MA, Qureshi JA, Zaman T (2006) Prenatal diagnosis of beta-thalassemia in Southern Punjab, Pakistan. Prenat Diagn 26:903–905

    Article  CAS  PubMed  Google Scholar 

  • Carr IM, Markham SA, Pena SD (2011) Estimating the degree of identity by descent in consanguineous couples. Hum Mutat 32:1350–1358

    Article  PubMed  Google Scholar 

  • Chitty LS, Hill M, White H, Wright D, Morris S (2012) Noninvasive prenatal testing for aneuploidy-ready for prime time? Am J Obstet Gynecol 206:269–275

    Article  PubMed  Google Scholar 

  • Chiu RW, Akolekar R, Zheng YW, Leung TY, Sun H, Chan KC, Lun FM, Go AT, Lau ET, To WW, Leung WC, Tang RY, Au-Yeung SK, Lam H, Kung YY, Zhang X, van Vugt JM, Minekawa R, Tang MH, Wang J, Oudejans CB, Lau TK, Nicolaides KH, Lo YM (2011) Non-invasive prenatal assessment of trisomy 21 by multiplexed maternal plasma DNA sequencing: large scale validity study. BMJ 342:c7401

    Article  PubMed Central  PubMed  Google Scholar 

  • Croot EJ, Grant G, Cooper CL, Mathers N (2008) Perceptions of the causes of childhood disability among Pakistani families living in the UK. Health Soc Care Community 16:606–613

    Article  CAS  PubMed  Google Scholar 

  • de Jong A, Dondorp WJ, Frints SG, de Die-Smulders CE, de Wert GM (2011) Advances in prenatal screening: the ethical dimension. Nat Rev Genet 12:657–663

    Article  PubMed  Google Scholar 

  • Douglas-Hall, A. and Chau, M. M. (2007) Parents’ low education leads to low income, despite full-time employment. New York, National Center for Children in Poverty, http://fetalanomaly.screening.nhs.uk/getdata.php?id=11304. Accessed 06 Jun 14

  • EUROCAT Central Registry (2010) EUROCAT special report: prenatal screening policies in Europe 2010. University of Ulster

  • Green JM, Hewison J, Bekker HL, Bryant LD, Cuckle HS (2004) Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technol Assess 8:iii, ix-iii,109

  • Hauari H, Hollingworth K (2009) Understanding fathering: masculinity, diversity and change. York, Joseph Rowntree Foundation

    Google Scholar 

  • Hewison J, Green JM, Ahmed S, Cuckle HS, Hirst J, Hucknall C, Thornton JG (2007) Attitudes to prenatal testing and termination of pregnancy for fetal abnormality: a comparison of white and Pakistani women in the UK. Prenat Diagn 27:419–430

    Article  PubMed  Google Scholar 

  • Hill M, Barrett AN, White H, Chitty LS (2012) Uses of cell free fetal DNA in maternal circulation. Best Pract Res Clin Obstet Gynaecol 26:639–654

    Article  PubMed  Google Scholar 

  • Jafri H, Ahmed S, Ahmed M, Hewison J, Raashid Y, Sheridan E (2012) Islam and termination of pregnancy for genetic conditions in Pakistan: implications for Pakistani health care providers. Prenat Diagn 32:1218–1220

    Article  CAS  PubMed  Google Scholar 

  • Karim S, Saeed K, Rana MH, Mubbashar MH, Jenkins R (2004) Pakistan mental health country profile. Int Rev Psychiatry 16:83–92

    Article  PubMed  Google Scholar 

  • La Piere RT (1934) Attitudes vs. actions. Soc Forces 13:230–237

    Article  Google Scholar 

  • Lewis C, Silcock C, Chitty LS (2013) Non-invasive prenatal testing for Down’s syndrome: pregnant women’s views and likely uptake. Public Health Genom 16:223–232

    Article  CAS  Google Scholar 

  • Lo YM, Corbetta N, Chamberlain PF, Rai V, Sargent IL, Redman CW, Wainscoat JS (1997) Presence of fetal DNA in maternal plasma and serum. Lancet 350:485–487

    Article  CAS  PubMed  Google Scholar 

  • Ministry of Finance. Pakistan Economic Survey 2011-12. (2011) http://www.finance.gov.pk/survey_1112.html. Accessed 14 Feb 14

  • Modell B, Harris R, Lane B, Khan M, Darlison M, Petrou M, Old J, Layton M, Varnavides L (2000) Informed choice in genetic screening for thalassaemia during pregnancy: audit from a national confidential inquiry. BMJ 320:337–341

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  • Naseem S, Ahmed S, Vahidy F (2008) Impediments to prenatal diagnosis for beta thalassaemia: experiences from Pakistan. Prenat Diagn 28:1116–1118

    Article  PubMed  Google Scholar 

  • Rahman S, Obaid-ur-Rahman M (2005) Prevalence rate of Down’s syndrome in Karachi resident women. Pak J Pharm Sci 18:61–63

    PubMed  Google Scholar 

  • Rathore FA, New PW, Iftikhar A (2011) A report on disability and rehabilitation medicine in Pakistan: past, present, and future directions. Arch Phys Med Rehabil 92:161–166

    Article  PubMed  Google Scholar 

  • Sawyer SM, Cerritelli B, Carter LS, Cooke M, Glazner JA, Massie J (2006) Changing their minds with time: a comparison of hypothetical and actual reproductive behaviors in parents of children with cystic fibrosis. Pediatrics 118:e649–e656

    Article  PubMed  Google Scholar 

  • Twiss P, Hill M, Daley R, Chitty LS (2013) Non-invasive prenatal testing for Down syndrome. Semin Fetal Neonatal Med 19:9–14

    Article  PubMed  Google Scholar 

  • Van Riper M (2007) Families of children with Down syndrome: responding to “a change in plans” with resilience. J Pediatr Nurs 22:116–128

    Article  PubMed  Google Scholar 

  • Yousafzai AK, Farrukh Z, Khan K (2011) A source of strength and empowerment? An exploration of the influence of disabled children on the lives of their mothers in Karachi, Pakistan. Disabil Rehabil 33:989–998

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The authors are thankful to Prof. Dr. Yasmin Raashid, Dr. Yasmin Shah, Mr. Shahid Anwar and Mr. Ayub Butt and other staff working in their respective institutions for providing access and support. We would also like to thank those parents in Lahore who participated in the study.

Conflict of interest

Hussain Jafri, Jenny Hewison, Eamonn Sheridan and Shenaz Ahmed declare that they have no conflict of interest.

Compliance with ethics guidelines

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (Research Ethics Committee, Pakistan Medical Association, Lahore) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to S. Ahmed.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Jafri, H., Hewison, J., Sheridan, E. et al. Acceptability of prenatal testing and termination of pregnancy in Pakistan. J Community Genet 6, 29–37 (2015). https://doi.org/10.1007/s12687-014-0198-9

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12687-014-0198-9

Keywords

Navigation