Dilemmas for donor sperm selection, provider information explained

If you have an egg donor screened with the Invitae panel 301 diseases, and the biological father has been screened, the genetic background of the surrogate won’t make any difference. They wouldn’t be able to switch anything on.

There is little of an argument whether the uterine environment affects the development of a baby, so perhaps their genes impact the genetic functioning of the child. There is still little known about that.  There may be subtle things that we don’t understand at the moment. Perhaps the environment that a baby grows in may affect which genes can be, as you said, switched off or on or perhaps more active. For recessive diseases, the answer is no. 

‘ll have to check that and get back to you why you were told that, but I would have thought that if a donor has been recruited, and was going through the recruitment process, there wouldn’t be anything unless you were a carrier of the same condition. 

Some recessive diseases actually can slightly increase your risk of cancer. However, there’s a lot of other unknown factors, such as environmental factors,  and perhaps other genes working alongside or confounding gene, as well. It may be that those people who are a carrier of that condition, but I would need to check that I don’t know of the top of my head.

As an embryologist, I can answer that. Generally,  I’m assuming that you’re talking about live birth packages for the number of treatments and using donor eggs. The reason is that generally, TESA sperm tends to be of lower quality and so you don’t actually see as many moving sperm, and perhaps the morphology of the sperm is not as good.

Most of the live birth packages they offer will need the sperm to meet certain parameters because they don’t want the sperm factor involved. They’re offering you eggs, and they’re guaranteeing the eggs, but they can’t guarantee the eggs if the sperm doesn’t reach those criteria.

I would say that in the European countries it’s variable. I’ll count the UK as being part of Europe as it was before December.  For a lot of the UK banks, they will test for a minimum, they will only test for cystic fibrosis.

Some European donor banks will do carrier screening of about 47- 48 genes, others will do less than that. Some will also offer a carrier match option where you would go to them, and you could pay extra to be tested to see if you’ll carry a match with the donor if you wanted to, but then you’re not given the results of that finding, so you wouldn’t know, but they can just tell you whether it’s safe to use or not. I think that’s because of the laws in that country, I think specifically, in Denmark, it’s not allowed to find out the results. If they did tell you your results, then the donor would have. There’s an option for that information to be out.

I know a donor bank at the moment that screens for 46-47 in Europe. If a donor is a carrier, they exclude them. There’s a paper that just came out in human reproduction last week saying that this isn’t sustainable because if we’re going to carry a screen, we won’t have enough donors,  and being a carrier doesn’t have an effect on health, and so there won’t be sufficient donors. This is why the U.S. banks that screen for more conditions give that information, so it’s evaluated. People have the information to make informed decisions about how they want to proceed.

There is a shortage of African donors, I was speaking to a lady today who was finding it difficult, but there are some. Perhaps if you went to some big U.S. donor banks and if you’re looking for non-anonymous, then there are boxes to do your search criteria. If you do your search criteria by countries that only allow non-anonymous donors, such as the UK, then they will come up.

Not many donors I know are tested for 600 genes at the moment, so if you were tested for 600 genes and the donor was only tested for 283, there’s a chance that you could come up as being a carrier for something that the donor isn’t, and then you’re almost back to square one. Again that information can be valuable. You’re more likely to come up with a carrier status of an egg donor and a husband if you screened for more things.

Going back to our example of purple, both being purple, for example, the more you look, perhaps it’s slightly more likely to find that. I would say that it’s about how far we want to look, so do we say that looking at 40 conditions is sufficient, do we say 283, or do we look at the whole genome, it’s really about minimizing the risk rather than eliminating it.

Generally, donor banks at the moment are offering 283, some are doing 40, so you know 600 probably is a top option at the moment. If it’s offered as a package, I think they call it like a carrier match, they look at it and then tell you we’ve screened these 600 genes, and you don’t have alterations in the same gene that pose a risk to a child, and that’s what they would tell you, so it would be the most risk-reducing, but then you have to look at it from the point of view of expense and value as well.

I know in Europe some clinics are offering their own carrier screening, so they’ll do it in-house, for example, they say we’re testing a thousand genes but then sometimes what can happen is you can find a change in a gene and people were not sure what that means, and there’s a question mark over that, do we know this causes disease, is it likely pathogenic or lightly pathogenic, there may not just be that information. You end up with lots of question marks and perhaps worry about something that might not happen or might not be important, and they’re called a variance of unknown significance. When they start to get reported, when you’re starting to get nitty-gritty, it can be a can of worms that can be difficult to interpret and perhaps cause anxiety around things that normally wouldn’t be considered.

 In this situation, I would contact the bank because I think the European sperm bank may be the one in Denmark or have to be under the rules of Denmark where they’re not allowed to tell you what the donor is a carrier of, for example. Whereas if you submitted your test report on the official Invitae report, if you then send that to them, they will be able to check with their findings if there’s a carrier match, and so that’s the way I would do that. The donor bank will perhaps have more information and understand how to do that a little better than the clinic. You would have that reassurance before you purchase the donor as well.

It depends on if the donors have the extended screening or not, so I think some donors will have had the extended carrier screening, and some of them don’t. There’s a special term they give on their website for a donor who had the extended carrier screening, so first, check that. If the donors are having extended carrier screening, then share your report with the donor bank.

They may not have used the Invitae panel, so it could be that you’ve been tested for some things that the donor hasn’t been tested for and vice versa, and they would perhaps need to be able to look at that, and their genetics team would be able to help you I’m sure.

There’s a 10 family limit in the UK, and then every country may have its own regulations about how many families each donor can have, but it can be cumulative across countries.  I don’t know how many in the U.S. or Europe are allowed, so yes is the answer.

You have to purchase a pregnancy slot in the UK for a 10 family limit as part of the 10 families, and then if you do achieve your family, you hold that slot, that’s yours, and you can use the donor for sibling use, but it does mean that the donor will be used for family building outside the UK as well. When you’re perhaps looking for how many genetically related individuals there will be from that donor and whereabouts they are in the world, that’s something that it’s very difficult to ascertain at the moment.

I don’t even know whether it would be monitored worldwide at the moment, but I would think that in each European country, they would have their regulation for their own country, and then they may ship to the UK where there’s a regulation.

Some European donor banks have outlets in the US where you can order a donor from the US that can be shipped to Europe and then to somewhere else, so I don’t think that is monitored at the moment, definitely not worldwide. It may be within individual donor banks, they may have some policy around that, but I’m not sure that it is a requirement.