▸ Example 1: ‘Well, I didn't know I was actually being tested for that … and then I had a letter saying that I had the beta thalassaemia trait. And obviously I didn't know what that was because I've never heard about that before … I was terrified, I didn't know what it was all about.’ (White British woman. Discovered she was a beta thalassaemia carrier in pregnancy; partner not a carrier.)

▸ Example 2: I suppose if you've got that person on the line, you can actually ask questions straightaway. Whereas I had to ring up [following receipt of a letter]. If she hadn't have been in the office I wouldn't have been able to speak to her straightaway…But some people might not be that fortunate. And like I say it put my mind at ease that day.’ (Mother of white British and Jamaican origin, son identified as sickle cell carrier through newborn screening.)

▸ Example 3:

Father: ‘You almost wish that somebody would help you and sort of say, “Well, I think you should do this.” But of course they wouldn't, they wouldn't say either way, “We think you should do this. We think you should do that.” … Sometimes I sort of wished that somebody had given us a guiding hand, because it was so hard to decide.

Mother: ‘I feel to an extent differently. I don't think that any medical professional, I don't think they certainly can, and I don't think they should give you, push you in any direction at all. I mean, ultimately when you're talking about screening and what you will potentially find out about your unborn child could result in, in the end of that pregnancy, and that has to be a decision that only the parents take, without any guidance, I think, from, from any professional. (White British couple, both beta thalassaemia carriers, had prenatal diagnosis and decided to continue with affected pregnancy.)

▸ Example 4: ‘They said get checked, everyone said get checked. And he [her husband] would not agree, he said, “We don't want to get checked.” And there was [the counsellor], and she said that if the child has thalassaemia, then you can terminate such a baby, or it could be that it is not well or something. We said that we would not have termination. We thought that we will get checked, and we'll know, but we will not have termination.’ (Translated from Mirpuri. Mother of Pakistani origin and Muslim faith, first child has beta thalassaemia major. Now regrets having had chorionic villus sampling.)

▸ Example 5: ‘I think I tried to prod them in a way, and say, you know, “If I have to go to termination, what is the steps?” They tried to be nice in a way, they tried not to go down that route … I think they were trying to be neutral, but in a way if the patients want to know, then they should give us the whole works rather than shield us.’ (Father of Vietnamese origin. Antenatal screening showed his partner carried beta thalassaemia and he carried haemoglobin E. Subsequent amniocentesis showed baby was unaffected.)