Attitudes towards prenatal testing and termination of pregnancy in British Pakistani parents and relatives of children with recessive conditions in the UK

Abstract

Objective: To compare British Pakistani parents' and their relatives' attitudes to prenatal testing (PND) and termination of pregnancy (TOP) for a range of conditions.

Method: A total of 222 British Pakistani participants: 117 parents of children with a child with a genetic condition (52 fathers and 65 mothers) and 103 of their relatives (51 males and 52 females) completed a structured questionnaire about their attitudes toward PND and TOP for 30 different conditions.

Results: Parents were more accepting of PND (P < 0.001) and TOP (P < 0.001) than their relatives for most of the conditions. Male relatives were consistently least interested in PND and TOP, except for conditions at the serious end of the continuum, where over 90% would opt for PND for quadriplegia and anencephaly, and over 60% would opt for TOP for these conditions.

Conclusion: The lower level of interest in PND and TOP in relatives, particularly men, may be due to lack of information disseminated by parents about their child's recessive inheritance and its implications for relatives, resulting in poor understanding of genetic risk. These findings highlight the need for the provision of proactive genetic counselling to raise awareness of genetic risk and facilitate informed reproductive decision-making in at-risk relatives.