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Table 4 Fertility and gene therapy

From: Decision-making about gene therapy in transfusion dependent thalassemia


Key Quotes

Adult patient perspectives

‘ …..even if it would leave me infertile, I think I’d be okay with that’

‘…and I think that they recommend that, right, that you, you store um, sperm samples in case you decide on one, and I do want to have children eventually, so that actually, that is a, that is a concern for me but not as strong as the other concerns. Probably like the lowest of my concerns

‘I’m not sure that I would pursue it …., um if I wanted to have kids, right now, um, I mean in the next couple of years for example because it would probably be the last uh, few years where I would be able to do that, so that would be like my priority over gene therapy’

Parent Perspectives

‘I have to think that the fact that he has a gene, a genetic disorder that will pass down to his children, that might uh, I would think it would probably affect his decision and maybe have him choose to not have biological children, but again, that’s gonna be, that’s gonna be his call when he’s older, so I guess I’m just trying to think towards the future and um, I dunno’

‘I don’t foresee it as being too much different, I think that we still have to worry about it, or if they’re unable to have their own children, that might even be the case today, with the situation today. So I don’t, I don’t think that it’ll be much worse than today, it may be that, maybe, he can have children today but there’s a chance that he’ll pass that you know, beta thalassemia onto his children, versus with gene therapy, he may not be able to have children at all and that’s a, almost a, you know, it’s not the same thing but it’s pretty close to me in my mind’

That’s hard to say, um, simply because it is her decision, but she’s too young to make that decision…………. But that’s kind of hard because even if she keeps with thalassemia, there’s complications if she was to have a child, so don’t really know’

‘Yes, definitely. Especially for our daughter. She, uh, you know, at 7 years old, is absolutely baby-obsessed, and adores babies. So, um, that – that’s something we have talked about, too. That would be a concern. It wouldn’t be a reason we wouldn’t pursue it at all, but, um… We don’t feel like we could… We don’t want to make that decision for her’