Would you participate in a IVF genome research project

[csec]

Dear all,

I have been part of this community for 3 years now, though this is my first post. Just like everyone here I have sturggled to conceive and my solution came from IVF. I am very grateful to say that I was successful and have now a happy 3 year old son. But the journey was not easy. Also I am a scientist and it baffles me how little research is acutally done on the topic. The protocols mostly focus on changes in hormone levels (environmental changes) but to be fair, the individual responses to the treatment are so varied and the success rates are so low that its almost feels that we missing something.

We blame age and egg quality most of the time but there are very very very few studies that actually looked at the eggs themselves. We look at embryos (ok, blastocysts) but there we have 2 genomes form Mom and Dad, and if we don't sequence mom and dad we don't know who's is responsible for what, who or what brought mutations in or why they happened.

What I want is to create a scientific consortia that will gather genome scientists, clinicians and hundreds of patients, get them sequenced, get the eggs sequenced (I know quite challenging to agree to donate even 1 egg and not use it for fertilisation), get the sperm sequenced to understand what is the genetic make up that gives us troubles and how can we find a solution in those cases.

Also I would like to bring psychologists to the project that would design surveys to evaluate the impact on mental health form both the treatment and outcomes.

IVF is a billion pound industry and it has huge economical implications for those who go through it, and still no one considers or provides sufficient support. We often take time off either from the allowed vacation time or unpaid that will definitely have an impact on both our work and our workplaces. To answer this, the project would also bring along economists that would evaluate the actual monetary impact.

So before I go to talk to a founding body about it (if they are even willing to consider - the research grants are always competitive but we need to know if they are in the remit of funding), I want to know if you, this amazing IVF community would be willing to participate in such a project. Without real life volunteering patients there will be no project. And in these types of projects recruitment of patients is the hardest and takes the longest amount of time. So what I want from you is to get an idea if you, or people you know form here would be willing to take part in this.

As a disclaimer, I want to say that this project would hopefully be the start of a more focused research program for fertility. It will give us insight, but solutions will not be immediate (some might benefit straight away - but most will not), but you would know that your contribution would make the life of future dream-to-be-parents so much better.

So please let me know your thoughts on the matter.

[Nakijo]

This gives a bit of hope. Unfortunately I live on a different continent and the people that I could recommend live near me. I hope is that you get the egg donations needed for research.

[BM000]

I work in research (mental health) and find it so frustrating how little is known about fertility. I always tick the ‘happy for my eggs to be used in research’ box on the forms as I know that change will never happen without it but my husband won’t do that for sperm (even though he works in research too) and neither of us are comfortable with research on a blastocyst. I think you might find it hard to get women to donate a viable egg as we all know how much ivf is a numbers game. Could you get the same info from sequencing an immature one? If so then that’s something I personally would be willing to do

[BM000 in reply to BM000]

It’s also so hard to interpret results from studies as people undergo ivf for so many different reasons (unexplained infertility, male factor, age related, recurrent miscarriage, blocked tubes, endometriosis etc). Things might actually work really well for one group but they just lump everyone together.

[XI82]

My wife and I have had 3 goes at IVF, all looking really good going by prior testing and protocols but haven’t had a single blastocyst out of more than 40 eggs (that were fertilised). Both clinics we used, one in UK, the other in Greece couldn’t be definitive in whether the problem lay with me or my wife (or both) citing a severe quality issue but wanted to press ahead with using donor sperm. The toll on our mental well-being has been immense given that we don’t feel any further forward and only now, some 4 months after the last round, we are feeling like we are ready to investigate further, all be it in the new year.

The financial burden is also a concern as what if we get it wrong again and have to start over even if it does allow us to narrow down our issue.

We don’t want to give up hope on us both being biological parents so would wholeheartedly support any further research/testing into the cause of this kind of unexplained infertility.

[Tnthketnf]

I have given up on genetic motherhood. Currently pregnant with DE after 5 OE cycles between 37-39 years old. I was told unexplained /maybe quality issues but not confidently . Anyway I moved on but if my old eggs could help finding out more about how to improve this process for other people I would be willing to donate when it's possible again.