Acceptability of prenatal testing and termination of pregnancy in Pakistan

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.

Attitudes towards non‐invasive prenatal diagnosis among obstetricians in Pakistan, a developing, Islamic country

“…The findings suggest obstetricians support the prevention of genetic conditions. This may be due to their understanding of women's demand for prenatal screening tests for various conditions, and experiences of the implications for affected families, as there is no government provision of medical, social or financial support for such families…”

“…The majority of doctors would offer NIPT for Down syndrome, other aneuploidy/chromosomal anomalies and Rh blood group. This may be because prenatal screening and diagnostic tests are already available privately for these conditions in Pakistan and termination of pregnancy is acceptable for various conditions . Given the emphasis on doctors in Islamic states to decide the conditions for which prenatal screening, diagnostic tests and termination should be available, further research should explore obstetricians' attitudes towards a larger range of conditions, including those for which prenatal screening is not currently available or conditions that could be considered less serious.…”

Implementation of public health genomics in Pakistan

“…Termination of pregnancies affected by genetic anomalies in Pakistan, including β-thalassemia during the first trimester, is generally accepted as permissible in the Pakistani religious community [27]. However, pre-natal testing and carrier screening for β-thalassemia are not available in most government hospitals in Pakistan.…”

“…An increasing population with limited public health budget [70] 10. Cultural and religious factors [4,27] 11. Low literacy level in women (especially amongst rural populations-estimated at 26.6% [34] increase the social burden on women for pre-natal testing and termination of pregnancy [32].…”

Methods to estimate access to care and the effect of interventions on the outcomes of congenital disorders

“… Likely to substantially underestimate the number of TOPs, and hence overestimate the number of stillbirths and affected births Where evidence of widespread availability of TOP, access to prenatal diagnosis can be predicted using model for optimal care and that when diagnosed the proportion of women opting for TOP is equal to the EUROCAT average. Pakistan evidence of acceptability of TOP especially for severe conditions (Jafri et al 2015 ) Not known D Illegal No data due to legal status No pregnancies are terminated TOP likely available to a subset of the population in many of these countries, but supporting evidence not available. Will underestimate the number of TOPs, and hence overestimate the number of stillbirths and affected births …”