London — Sperm from a donor who unknowingly carried a cancer-causing gene has been used to conceive nearly 200 babies across Europe, an investigation by 14 European public service broadcasters, including CBS News' partner network BBC News, has revealed.
Some children conceived using the sperm have already died from cancer, and the vast majority of those who inherited the gene will develop cancer in their lifetimes, geneticists said.
The man carrying the gene passed screening checks before he became a donor at the European Sperm Bank when he was a student in 2005. His sperm has been used by women trying to conceive for 17 years across multiple countries.
The cancer-causing mutation occurred in the donor's TP53 gene — which prevents cells in the body from turning cancerous — before his birth, according to the investigation. It causes Li Fraumeni syndrome, which gives affected people a 90% chance of developing cancers, particularly during childhood, as well as breast cancer in later life.
Up to 20% of the donor's sperm contained the mutated TP53 gene. Any children conceived with affected sperm will have the dangerous mutation in every cell of their body.
"It is a dreadful diagnosis," cancer geneticist Clare Turnbull told the BBC. "It's a very challenging diagnosis to land on a family. There is a lifelong burden of living with that risk. It's clearly devastating."
How was the discovery made?
The affected donor sperm was discovered when doctors seeing children with cancers linked to sperm donation raised concerns at this year's European Society of Human Genetics.
At the time, 23 children with the genetic mutation had been discovered, out of 67 children linked to the donor. Ten of those children with the mutation had already been diagnosed with cancer.
Freedom of Information requests submitted by journalists across multiple countries revealed at least 197 children were affected, though it is not known how many inherited the genetic mutation.
More affected children could be discovered as more data becomes available.
"We have some children that have developed already two different cancers and some of them have already died at a very early age," Edwige Kasper, a cancer geneticist at France's Rouen University Hospital, told journalists.
The European Sperm Bank told CBS News that it does not ship to the United States due to U.S. regulations. A representative said the bank does work with with sperm banks in both Canada and Mexico.
How did the sperm get used by women all over Europe?
The donor sperm was sold by the European Sperm Bank in Denmark to 67 fertility clinics in 14 countries.
Nations have their own regulations about how many times a donor's sperm can be used domestically, but there is no international law restricting how many times a donor's sperm can be used worldwide.
It appears that some national laws were breached.
In Belgium, where sperm from a single donor is supposed to be used by a maximum of six families, 53 children were born to 38 different women using sperm from the donor with the genetic mutation, the investigation found.
In what way? They vastly exceeded the national limit there, which sucks for a country that isn't that big (risk of a half-brother and sister having children together without knowing)
In eukaryotes, diploid precursor cells divide to produce haploid cells in a process called meiosis. In meiosis, DNA is replicated to produce a total of four copies of each chromosome. This is followed by two cell divisions to generate haploid gametes. After the DNA is replicated in meiosis, the homologous chromosomes pair up so that their DNA sequences are aligned with each other. During this period before cell divisions, genetic information is exchanged between homologous chromosomes in genetic recombination. Homologous chromosomes contain highly similar but not identical information, and by exchanging similar but not identical regions, genetic recombination increases genetic diversity among future generations.[12]
Maybe I'm missing something, but it doesn't seem to explain what's going on at all.
The cancer-causing mutation occurred in the donor's TP53 gene — which prevents cells in the body from turning cancerous — before his birth, according to the investigation.
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Up to 20% of the donor's sperm contained the mutated TP53 gene. Any children conceived with affected sperm will have the dangerous mutation in every cell of their body.
It doesn't talk about Mendelian basics, he wasn't a "carrier" that had unfortunate offspring when he reproduced with another carrier, it's talking about his own DNA. If it had occurred during fertilization, his whole body would have this gene, and all the sperm he produced would have this gene.
Maybe the mutation happened NOT in meiosis, but during blastocyst cell differentiation, at a time when the entirety of the testes comprised half a dozen stem cells, and only one of them got the random transcription error?
The gene is on a somatic chromosome. So it may have been passed only to some cells because of chromosomal recombination. Only the Y chromosome is transferred consistently in males.
In that case it would still be half the sperm, not 20%, carrying the mutant allele.
I think the previous comment is correct in guessing the mutation occurred sometime during the father's own embryonic development so only a subset of the germ cells are affected.
Maybe the mutation happened NOT in meiosis, but during blastocyst cell differentiation, at a time when the entirety of the testes comprised half a dozen stem cells, and only one of them got the random transcription error?
It sounds like you know more than me but I thought if only one of the donor’s parents had the gene, then it’s possible that only some of his sperm contain it.
No, if he has the gene, he has the gene. It's about how sexual cell division occurs. I don't know this in detail, but for one a sperm only has half the chromosomes of a normal cell because the egg has the other half. And during chromosome recombosition the genes get shifted around between the 2 chromosomes
From reading some articles I'm assuming this dude is a chimera for the cancer causing gene; that is, not every one of his cells has the same DNA.
It sounds like this cancer causing gene just happened to crop up in one cell not long after fertilisation, so back when he was just a few cells rapidly multiplying. Because it was one of these very early cells that the gene cropped up in it means some of his body has the cancer causing gene, but not all of it. Unfortunately some of it has ended up in his testes, so 1/5 of the sperm he produces also has that gene but not all of it.
At the time, 23 children with the genetic mutation had been discovered, out of 67 children linked to the donor. Ten of those children with the mutation had already been diagnosed with cancer.
Freedom of Information requests submitted by journalists across multiple countries revealed at least 197 children were affected, though it is not known how many inherited the genetic mutation.
197 children, for one man? I'm sure they all chose this guy on account of his great personality.
In my localized experience, women seem to hyper focus on men in their 20s with advanced degrees. There were (almost) no photos to look at, just a basic description like race, hair/eye colour, body type, etc. One bank used offered up childhood photos of the donator only.
After the age and degrees, they put equal effort into interests and physical description, looking for something that sounded as much like them as possible.
I know you were being sarcastic, but I really wanted to respond anyway. It was a hell of a ride to be an observer, and I often self-debate the topic, wondering how important or not important the adult personality is in the choice.
All my friend wanted was a kid who had as much liklihood of being like him as possible, so yes he chose a man whose interests were similar, height was similar, hair colour was similar. But as you said, there were no pictures
They focus on men in their 20’s because of the research showing that sperm quality starts to decline when men turn 25, and more health issues become possible with the resulting offspring after that. Men under 25 have the healthiest, most robust sperm, which I believe sperm banks also educate women clients about. It has to do with the health and fertility of the donor. Sperm declines further when men turn 30, and then falls off a cliff around 35. So women who want the healthiest possible children know to select the donors still young enough to produce top quality sperm.
We used the European Sperm Bank. We sorted first by race to match ours, then by who had already successfully had kids. You can see baby pictures, sometimes childhood ones. The cute ones, we read the profiles for, deselecting people with allergies, a family history of anything that also ran in our family, crypto-bro/libertarian types (because duh, that's obviously genetic, just like the ones I tossed out for saying they didn't like cats. That's also definitely genetic) and favoriting ones that had cool things, like the dude that did blacksmithing as a hobby.
After that, we selected based on their handwritten letter (a lot were generic, a handful were touching) and then the nurses description. You could tell which ones they liked, they used emotional descriptions (warm blue eyes, cheery smile, great to chat with, etc). Ones they didn't care much for were clinical (medium set gray eyes, proportionate nose, dressed casually and arrives punctually).
After selecting first race and already had kids, we had 300+ open donors available. After everything, we had around 20 we loved. I was surprised by the amount that were willing to be contacted by the kids when they turn 18. I expected a lot fewer, tbh.
I live in canada and someone here told me they got to see current photos of the donor, but with part of the face obscured. They could pick to see from the eyes up or from the nosw down, but not both.
Yes baby pictures but some commenters here are suggesting that women are just selecting hot men for their babies like some sort of eugenics conspiracy, when there's no actual pictures of the men. One guy down the comments called them "chads" ffs.
They do get looks information to choose, like 185cm tall, blond hair, blue eyes, athletic.
There's a similar story of a Dutch guy who did lots of donations by bank and then natural too. With the right chad perceived physical characteristics it's easy to get picked hundreds of times.
Yes, they get looks information. And from your tone the implication is that this is all just women looking for good looking babies. In actual fact it's mostly infertile men looking for characteristics that are similar to themselves so the resulting child will be similar.
This industry needs regulation, badly. No one person should have 200 genetic children, whether they are raising those children or not.
I’m curious to know if the donor experienced cancers himself, in childhood or otherwise. Could it hypothetically be that he’s a carrier but doesn’t suffer from it himself? Definitely not knowledgeable enough to know that myself.
I read it as he donated in Denmark and it got sold across the world. I have friends who did double donation in Spain and their donors were also Danish I think.
Like someone else mentioned, inbreeding. I recognize in this case the sperm was distributed through multiple countries so the risk is low, but it’s not nil.
A big part to me, though, is the impact it plays on donor conceived people (DCP). It is a psychological burden forcing them to pass through life without knowing who might be their blood and who might not. Many DCP already struggle psychologically with the effects of not having that genetic link to half of their biological family. Many DCP go looking for half siblings and it is extremely overwhelming for them to find hundreds of people. It makes bonding harder, and to some DCP that is an important thing.
I’ll also say that I understand that people who have never been separated from their biological families might not understand it, but genetic mirroring and nature over nurture are very real things. My father was adopted and never wanted to meet his biological family. At age 65 we happened to. Within 6 months he had moved across the country and was living with them. Many adopted/DCP do yearn for connections they don’t even know and they should have the best chance at being able to do that with a smaller group.
The long term psychological impacts of being DCP still aren’t fully understood, but imo they are the ones who had no choice in the situation (the donor decided to donate and the mother decided to carry) and we should be trying to make their lives easier, not adding additional burden.
When I say this industry needs to be regulated, a big part of the problem is that many sperm banks are self-report, so if you don’t tell them you had the baby, they don’t count it towards the total. There is no official registry or anyone keeping track of siblings, which again is a difficult thing psychologically.
In this case as well, the donor likely did not consent to have such a large number of children or to have his sperm sold across so many countries considering the article says multiple laws were broken. He should also be able to connect with his biological children if they want that, and I think to wrap your head around having 200 children would also be overwhelming.
Yeah, it obviously doesn’t apply in this case, but if donors are being selected for their health and achievements, I kind of don’t see the problem with more kids being born of smart, athletic, healthy parents.
I found out at the age of 38, after my parents had died, that I was conceived with a sperm donor. Thankfully not this guy. I'm in the US.
There are no regulations in the US on how many children a donor can father. There are no requirements to tell the resulting children ever.
Not having my family history makes healthcare complicated because it factors into cancer screenings.
There were several of my siblings growing up alongside me in my hometown. I never met them before I found out, but siblings have accidentally dated or married.
I find the fact 200 (!) children were concieved from one donor more horrifying than the genetic mutation. Nobody should have 200 genetic children, the risk of accidental incest is just way too big as well as the potential psychological impact that *anyone* could be your half-sibling. The European Sperm Bank issued a statement on their website that they introduced a family limit of 75 in 2022. Even "only" 75 is so, so much and the fact it took them so long makes me question their ethics a bit. Who guarantees they stop at 75 and don’t circumvent it by selling the sperm to another country? Scary
Accidental incest? I can't tell if you're joking. There are 600 million people in the EU; no need to worry about the incredibly tiny chance of incest. Not to mention having kid with a half sibling isn't going to produce a mutant. They will be a perfectly normal child.
And the psychology of incest is entirely around relations with siblings you grew up with. There's no genetic component to the "ick" factor.
Such offspring are not evenly scattered among the general EU population. There is also a larger second generation from such offspring with a higher chance of near-incest.
Yes, having a kid with a half sibling increases the chance "to produce a mutant". Hence why incest is a (generally) hardwired psychological issue.
That's not why incest is taboo; it has nothing to do with producing genetic anomalies. Otherwise we would have to ban anyone who's a carrier for a genetic condition from every having children. Also if you actually cited your source for your claim you'd find that the chances of a "mutant" child between siblings is a tiny increase from between totally unrelated parents.
Article text:
I can't really elaborate on why, but the situation on the Belgian side is hilariously more wrong than you think
In what way? They vastly exceeded the national limit there, which sucks for a country that isn't that big (risk of a half-brother and sister having children together without knowing)
Not wrong in the information sense, just Wrong in the “haha dark incest humor” sense
that's not at all what I meant
it's just that I cannot share the knowledge
Then why comment at all?
so that you know that the situation is hilariously more wrong than you think
Pointless
Wow, so dark and mysterious, you are super cool
Ok then
I know we're small asf but come on we're nearly 12 million strong ! That risk would be bigger for those small ass nations like Luxembourg or Iceland.
here are some hints :
how do you make sure not to exceed a limit ?
what could possibly prevent you to do that in this specific context ?
keep in mind that fertility centers obviously recorded all inseminations
oh no the accidental incest
What are you doing step belgium?
Yeah seriously at the end of the article there that just kinda stuck out a bit, guess they are more the laws are just guidelines crowd?
"I know something important, but I won't tell you."
Why was the gene found in 20% of his sperm rather than 100% or 0%?
https://en.wikipedia.org/wiki/Sexual_reproduction
0.o
Maybe I'm missing something, but it doesn't seem to explain what's going on at all.
.
It doesn't talk about Mendelian basics, he wasn't a "carrier" that had unfortunate offspring when he reproduced with another carrier, it's talking about his own DNA. If it had occurred during fertilization, his whole body would have this gene, and all the sperm he produced would have this gene.
Maybe the mutation happened NOT in meiosis, but during blastocyst cell differentiation, at a time when the entirety of the testes comprised half a dozen stem cells, and only one of them got the random transcription error?
The gene is on a somatic chromosome. So it may have been passed only to some cells because of chromosomal recombination. Only the Y chromosome is transferred consistently in males.
In that case it would still be half the sperm, not 20%, carrying the mutant allele.
I think the previous comment is correct in guessing the mutation occurred sometime during the father's own embryonic development so only a subset of the germ cells are affected.
It literally says the mutation occurred before the father's birth, ie while he was an embryo.
That was my inference.
It sounds like you know more than me but I thought if only one of the donor’s parents had the gene, then it’s possible that only some of his sperm contain it.
No, if he has the gene, he has the gene. It's about how sexual cell division occurs. I don't know this in detail, but for one a sperm only has half the chromosomes of a normal cell because the egg has the other half. And during chromosome recombosition the genes get shifted around between the 2 chromosomes
From reading some articles I'm assuming this dude is a chimera for the cancer causing gene; that is, not every one of his cells has the same DNA.
It sounds like this cancer causing gene just happened to crop up in one cell not long after fertilisation, so back when he was just a few cells rapidly multiplying. Because it was one of these very early cells that the gene cropped up in it means some of his body has the cancer causing gene, but not all of it. Unfortunately some of it has ended up in his testes, so 1/5 of the sperm he produces also has that gene but not all of it.
Yep, chimerism explains why it's only 20% affected.
I think you guys may be trying to reference mosaicism instead of chimerism
Curious, too. Read the other responses but not satisfied.
197 children, for one man? I'm sure they all chose this guy on account of his great personality.
In my localized experience, women seem to hyper focus on men in their 20s with advanced degrees. There were (almost) no photos to look at, just a basic description like race, hair/eye colour, body type, etc. One bank used offered up childhood photos of the donator only.
After the age and degrees, they put equal effort into interests and physical description, looking for something that sounded as much like them as possible.
I know you were being sarcastic, but I really wanted to respond anyway. It was a hell of a ride to be an observer, and I often self-debate the topic, wondering how important or not important the adult personality is in the choice.
All my friend wanted was a kid who had as much liklihood of being like him as possible, so yes he chose a man whose interests were similar, height was similar, hair colour was similar. But as you said, there were no pictures
They focus on men in their 20’s because of the research showing that sperm quality starts to decline when men turn 25, and more health issues become possible with the resulting offspring after that. Men under 25 have the healthiest, most robust sperm, which I believe sperm banks also educate women clients about. It has to do with the health and fertility of the donor. Sperm declines further when men turn 30, and then falls off a cliff around 35. So women who want the healthiest possible children know to select the donors still young enough to produce top quality sperm.
Lol’d at the claim about the fall after 35
https://www.semanticscholar.org/paper/Evaluation-of-Age-Effects-on-Semen-Parameters-of-Omran-Bakhiet/0db181b16908dc9cf0134703d5ff2f5e3cb4b839/figure/2
Come on, a 10 second Google will support their comment.
We used the European Sperm Bank. We sorted first by race to match ours, then by who had already successfully had kids. You can see baby pictures, sometimes childhood ones. The cute ones, we read the profiles for, deselecting people with allergies, a family history of anything that also ran in our family, crypto-bro/libertarian types (because duh, that's obviously genetic, just like the ones I tossed out for saying they didn't like cats. That's also definitely genetic) and favoriting ones that had cool things, like the dude that did blacksmithing as a hobby.
After that, we selected based on their handwritten letter (a lot were generic, a handful were touching) and then the nurses description. You could tell which ones they liked, they used emotional descriptions (warm blue eyes, cheery smile, great to chat with, etc). Ones they didn't care much for were clinical (medium set gray eyes, proportionate nose, dressed casually and arrives punctually).
After selecting first race and already had kids, we had 300+ open donors available. After everything, we had around 20 we loved. I was surprised by the amount that were willing to be contacted by the kids when they turn 18. I expected a lot fewer, tbh.
I live in canada and someone here told me they got to see current photos of the donor, but with part of the face obscured. They could pick to see from the eyes up or from the nosw down, but not both.
They will form a new Habsburg-dynasty.
Judging from the results so far they won't
Well, they will, just not for long.
I know you're trying to suggest it's all based on looks, but there are no pictures on the sperm bank website to protect identity.
There are pictures, they have baby pictures, sometimes childhood pictures. We used the European Sperm Bank for our kid.
Yes baby pictures but some commenters here are suggesting that women are just selecting hot men for their babies like some sort of eugenics conspiracy, when there's no actual pictures of the men. One guy down the comments called them "chads" ffs.
They do get looks information to choose, like 185cm tall, blond hair, blue eyes, athletic.
There's a similar story of a Dutch guy who did lots of donations by bank and then natural too. With the right chad perceived physical characteristics it's easy to get picked hundreds of times.
Yes, they get looks information. And from your tone the implication is that this is all just women looking for good looking babies. In actual fact it's mostly infertile men looking for characteristics that are similar to themselves so the resulting child will be similar.
Probably really tall guy and the cancer gene might be linked/correlated to the height genes
This industry needs regulation, badly. No one person should have 200 genetic children, whether they are raising those children or not.
I’m curious to know if the donor experienced cancers himself, in childhood or otherwise. Could it hypothetically be that he’s a carrier but doesn’t suffer from it himself? Definitely not knowledgeable enough to know that myself.
Our sperm bank only allows six live births before a donors sperm is pulled from the catalogue and can only be used for siblings. 200 kids is INSANE.
He was donating all across the world, in 16 different countries. He was regulated, but only 1 country at a time.
No, he donated in Denmark and the Danish sperm bank sold his semen to other sperm banks in Europe. This is legal.
I read it as he donated in Denmark and it got sold across the world. I have friends who did double donation in Spain and their donors were also Danish I think.
You made that up, nowhere does it say that about this donor. You’re thinking of the donor that had the documentary made about him.
Why? Not saying you’re wrong, just wondering about the reasoning. Because something like in the post might happen or is there another reason?
More risk of inbreeding I guess
I mean slightly but it’s 200 across many different countries. The chance is still minimal
Like someone else mentioned, inbreeding. I recognize in this case the sperm was distributed through multiple countries so the risk is low, but it’s not nil.
A big part to me, though, is the impact it plays on donor conceived people (DCP). It is a psychological burden forcing them to pass through life without knowing who might be their blood and who might not. Many DCP already struggle psychologically with the effects of not having that genetic link to half of their biological family. Many DCP go looking for half siblings and it is extremely overwhelming for them to find hundreds of people. It makes bonding harder, and to some DCP that is an important thing.
I’ll also say that I understand that people who have never been separated from their biological families might not understand it, but genetic mirroring and nature over nurture are very real things. My father was adopted and never wanted to meet his biological family. At age 65 we happened to. Within 6 months he had moved across the country and was living with them. Many adopted/DCP do yearn for connections they don’t even know and they should have the best chance at being able to do that with a smaller group.
The long term psychological impacts of being DCP still aren’t fully understood, but imo they are the ones who had no choice in the situation (the donor decided to donate and the mother decided to carry) and we should be trying to make their lives easier, not adding additional burden.
When I say this industry needs to be regulated, a big part of the problem is that many sperm banks are self-report, so if you don’t tell them you had the baby, they don’t count it towards the total. There is no official registry or anyone keeping track of siblings, which again is a difficult thing psychologically.
In this case as well, the donor likely did not consent to have such a large number of children or to have his sperm sold across so many countries considering the article says multiple laws were broken. He should also be able to connect with his biological children if they want that, and I think to wrap your head around having 200 children would also be overwhelming.
Yeah, it obviously doesn’t apply in this case, but if donors are being selected for their health and achievements, I kind of don’t see the problem with more kids being born of smart, athletic, healthy parents.
Yeah I really don’t know why I’m being downvoted when no one can give me the answer. 😅
I found out at the age of 38, after my parents had died, that I was conceived with a sperm donor. Thankfully not this guy. I'm in the US.
There are no regulations in the US on how many children a donor can father. There are no requirements to tell the resulting children ever.
Not having my family history makes healthcare complicated because it factors into cancer screenings.
There were several of my siblings growing up alongside me in my hometown. I never met them before I found out, but siblings have accidentally dated or married.
I find the fact 200 (!) children were concieved from one donor more horrifying than the genetic mutation. Nobody should have 200 genetic children, the risk of accidental incest is just way too big as well as the potential psychological impact that *anyone* could be your half-sibling. The European Sperm Bank issued a statement on their website that they introduced a family limit of 75 in 2022. Even "only" 75 is so, so much and the fact it took them so long makes me question their ethics a bit. Who guarantees they stop at 75 and don’t circumvent it by selling the sperm to another country? Scary
Accidental incest? I can't tell if you're joking. There are 600 million people in the EU; no need to worry about the incredibly tiny chance of incest. Not to mention having kid with a half sibling isn't going to produce a mutant. They will be a perfectly normal child.
And the psychology of incest is entirely around relations with siblings you grew up with. There's no genetic component to the "ick" factor.
Such offspring are not evenly scattered among the general EU population. There is also a larger second generation from such offspring with a higher chance of near-incest.
Yes, having a kid with a half sibling increases the chance "to produce a mutant". Hence why incest is a (generally) hardwired psychological issue.
That's not why incest is taboo; it has nothing to do with producing genetic anomalies. Otherwise we would have to ban anyone who's a carrier for a genetic condition from every having children. Also if you actually cited your source for your claim you'd find that the chances of a "mutant" child between siblings is a tiny increase from between totally unrelated parents.