To Do Or Not To Do Genetic Selection? - ROCKPAPERDRESSES
To Do Or Not To Do Genetic Selection?

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Photos by Alona Vibe

I’ve been pondering and pondering and thinking and thinking and speaking to Adam, speaking to lovely Trine (who, like Adam, is a carrier of the BRCA gene, about which she is sharing some thoughts HERE), speaking to friends and reading all of your thoughts following this post on the subject of when to have a second child.

As I’m still practicing thinking ‘when’ rather than ‘whether’ – I realise that I’m in some weird way feeling ‘indebted’ to higher powers, as if we most graciously have been gifted a child and should be thankful for that rather than speaking of a second child as a matter of course. That we ought to feel lucky. But isn’t that what normal people do? Make assumptions regarding fertility? I’d love to feel like one of them until I really have to worry again (deep inside I do know that nothing is a given in life, even though we’d wish it were; perhaps we’ll end up in the same situation again quite soon despite people’s, ‘I know someone, who…’ – I get a lot of those).

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After discovering that Adam carries the BRCA gene, we were invited in for a conversation at the hospital, which is yet to happen. A conversation meant to clarify what exactly this means to us – besides Adam already knowing that he’ll be initiating annual prostate cancer scans in five years. But also a conversation on what now? Can I risk going through painful hatchings, loading myself with hormones, only to bin all of them because they carry the gene? As a ground rule, there’s a 50 percent risk of passing on the gene. But what’s their advice and experiences? I’m planning to accept the invite. It can’t hurt.

As it is now, we’ve actually decided not to do genetic selection.

But are you a horrible parent when you deliberately risk the health of your child like this?

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I trust science. For women, the BRCA gene involves a risk of up to 80 % of developing breast and or ovarian cancer. That’s pretty considerable. But just like living with HIV is perfectly possible to day, unlike just 30 years ago, I’m thinking that incredibly much will happen just in terms of breast cancer research, for instance. We are talking about a child that’s yet to be born, yet to be conceived – and it only poses a risk for the child when it reaches 30-40 years of age. And only such a big risk if it’s a girl – and just 50 % risk of the girl even inheriting the gene. It’s just too many ifs for me to deselect an otherwise fine and fertilised egg.

Yes, I’m definitely totally affected when it comes to my eggs, haha! On the subject of abortion/no to abortion, lots of people will argue that it ‘isn’t anything’ before after a heart beat or week 12 at the earliest. But now that I’ve seen them being extracted from the ‘egg tray’ enough times, cheered for them loudly and crossed my fingers for them as they’ve been nicely inserted back into me. I can’t but feel quite familiar with them already on the fuzz stage. I find it hard to deselect them – it’s sad enough when the doctor says, ’18 out!’ but ‘only 3 survived all of the sorting requirements.’ A small loving thought goes out to my lost bio mass, which is floating around in some sink (or bin – or wherever they dispose of my damaged goods).

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It was really interesting to hear your thoughts. The extent to which we can screen today is just mind blowing. Where’s the limit? Do we know too much? Gaining knowledge forces us to make up our minds and perhaps act. And that’s how you end up deselecting all sorts of eggs, which could have developed into fine lives. Or boys, because you wanted a girl – and vice versa. Or the lefties, the redheads or those with crooked front teeth. Gone.

Science is wondrous – as there have never been fewer cases of stillborn babies in Denmark. In the early stages of a pregnancy, we may be able to make out the foetuses that wouldn’t have made it. Just as we’re able to deselect kids with Down’s and other lifelong diseases or genetic disorders. It’s a huge, complex responsibility. Receiving that sort of message, like Adam’s genetic test, and then trying to imagine the kind of life a child may have with various ‘defects’ or life-affecting diseases – only to decide whether that life is worth living and living with (on the side, that is).

When my sister came into this world, there were hardly any scans during pregnancies. Back then, people may generally just have entered pregnancy with the assumption that everything was good. There’s something to that. The sense of calm – the assumption that everything is all right (which is most often the case). There weren’t any private ultrasound scan clinics, the opportunity to listen to the baby’s heartbeat on a home-Doppler-thingy, the amount of tests we go through today. I found it hard myself to find that inner peace – until I could feel a kick, and I was ready to find calm in all of the external stuff; scans, etc, rather than an inner balance. The belief that it does go well in most cases when you’re past week 7.

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I’m easily influenced. Last night I dreamed that a witch came and cursed Eddie, dissolving him in my arms and leaving me with nothing but his teeth between my fingers because I had refused to give him to her. Most likely triggered by an episode of the new Chilling affairs of Sabrina, which I watched when home alone as a vulnerable mum of three weeks, in which a witch knocks on the door and collects babies and wants to take ‘The Spellman’s’ baby. I had to wake up myself from the nightmare and say, ‘chiiiill, he is still here – you’re not just clutching a set of teeth.’ 

I’m so easily affected by ‘cancer,’ ’eminent risk,’ etc. No one in the world would want that for their children. Nor themselves. But on a more cynical side, I also am aware that we are gonna die from something. That’s the only guarantee. A car tomorrow, another disease, a freak accident. Breast cancer also happens without the BRCA gene. Just as you may carry the gene and never get it.

So, for now, we’re just letting be. If we were to get pregnant tomorrow, that’s just fate. If nothing happens within the next two years, we have to be more proactive about it, perhaps look into treatment again. But for now, we aren’t opting for selection, we’re not going to mess with nature more than we’re already doing. As hypocritical as it may sound.

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