▸ Example 1: ‘If I had known right from the start that I was a carrier, I would have taken more care over my partner. I think I would have chosen a different partner. That's clear.’ (Translated from French. Mother of Roman Catholic faith. Child has sickle cell anaemia. Neither partner knew they were carriers before the birth.)

▸ Example 2: ‘If I could do a blood test before even getting pregnant that would be a different thing to me, you see? Because I would know myself that I can't have a child with someone who's got sickle cell … You might be in love with the person but it's, at the end of the day, it's the child that will be suffering, not you two. So you have to choose who you really — be careful really to know.’ (Mother of Congolese origin and Christian faith. Learnt through antenatal screening she was a sickle cell carrier, partner refused screening. Not aware she could have prenatal diagnosis. Baby diagnosed with sickle cell anaemia by newborn screening. Has since married new partner who had screening first — he is not a carrier.)

▸ Example 3: ‘I had an arranged marriage. You know, you don't say you've got a disease and “We want to check you, you know, your son, if he's got it as well”. You just went and got married. My mum was very much like, “Oh, well, don't say anything”. And they feel that it's like a stigma that there's something bad. You've got something. You know, there's something wrong with you.’ (Mother of Indian origin and Sikh faith. Discovered as a student she was a beta thalassaemia carrier. Husband tested during first pregnancy and is not a carrier.)

▸ Example 4: ‘If one spouse has thalassaemia [is a carrier], then they should have their son or daughter tested, and my message is that before planning their future, have blood tests … Like if I say to you I want to arrange my daughter's marriage, then I should say to you that “My daughter has thalassaemia [is a carrier], we should tell them before marriage. It's not a major condition. I have this condition too. So if you want, you should have your son tested as well. There could be a problem in their future”.’ (Translated from Urdu. Muslim mother of Pakistani origin, discovered she was a beta thalassaemia carrier in her first pregnancy, husband not a carrier.)

▸ Example 5: ‘The Molvies [priests] sit on Radio Ramadan when it opens and they said that Mashallah [God has willed it]. Yes, if it's more than this many weeks, then it is not permitted … But it's not a sin under 3 months, or up to 3 months. It's no sin, I mean, it's not alive. The soul enters at about 4 months … Have it checked within 11 weeks, and yes, if your child is major, then have a miscarriage [termination]. Nothing will happen. Eleven weeks is nothing, I mean, the soul has not entered the child yet, so it's not hard. (Translated from Mirpuri. Mother of Pakistani origin and Muslim faith, has a son with beta thalassaemia major. Has since had prenatal diagnosis by chorionic villus sampling in every pregnancy.)

▸ Example 6: ‘Every single day that you're waiting, you felt, “Oh, my God, this is such a precious thing”. So you feel more attached, and therefore if the termination does come, it would be even more painful.’ (Father of Vietnamese origin. Antenatal screening showed his partner carried beta thalassaemia and he carried haemoglobin E. Subsequent amniocentesis showed baby was unaffected.)