Ethical dilemma question: If you were dating a carrier of the Huntington's gene

[dbeast]

[Disclaimer: This is 100% hypothetical, I just thought of it the other day after seeing a patient with the disease and it really got me thinking...]

For those of you who do not know about Huntington's Disease, long story short, it can have a 50% likelihood of expressing itself in the child of a carrier of the gene, and it is a fatal disease that slowly destroys a person's brain. Terrible stuff.

Now hypothetically, if you were engaged to someone and found out he/she carried the gene and presumably you wanted kids in the future, would you feel the need to break up with that person? Would you adopt? Take your chances and have kids?

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[OneOfShempsKids]

[Disclaimer: This is 100% hypothetical, I just thought of it the other day after seeing a patient with the disease and it really got me thinking...]

For those of you who do not know about Huntington's Disease, long story short, it can have a 50% likelihood of expressing itself in the child of a carrier of the gene, and it is a fatal disease that slowly destroys a person's brain. Terrible stuff.

Now hypothetically, if you were engaged to someone and found out he/she carried the gene and presumably you wanted kids in the future, would you feel the need to break up with that person? Would you adopt? Take your chances and have kids?

It is really a confusing ethical dilemma. I don't know if I would break up with that person, but how could I handle having a child knowing they may grow up and have a horrible life post-40 years old? Yet, again, would I rather have my child an opportunity to see the world than risk having them see life at all?

 

[BadHorse]

Adopt. What? Is this even a question? Break up with the (presumed) love of your life, give birth to a kid with a 50 percent chance of living in fear and dying horribly or adopt?

 

[Sammich117]

Just to clarify, it's not really as if the parent is a carrier. The parent would HAVE Huntington's since it's dominant, so the whole addition of the parent dying early adds to the whole ethical debate.

 

[kexy]

Um... I would use PGD and IVF?

 

[gettheleadout]

Adopt. What? Is this even a question? Break up with the (presumed) love of your life, give birth to a kid with a 50 percent chance of living in fear and dying horribly or adopt?

So someone with a 50/50 chance of passing on a terminal disease to their kids is never ethically justified in wanting to reproduce?

 

[BigRedder]

Hypothetically, do I like to dance?

 

[SouthParkMD]

You should ask Dr. Foreman. He would know.

 

[Sammich117]

So someone with a 50/50 chance of passing on a terminal disease to their kids is never ethically justified in wanting to reproduce?

I don't think that's what anyone is saying. But knowing that there's a 50/50 chance of giving a disease with no survival rate to your kid, plus dying young makes it a lot more complicated of a decision.

 

[kexy]

I think a much more interesting dilemma is, should they choose to reproduce naturally, do the parents have the right to test their child for the HD gene? Do they have the obligation? Should the child have to grow up knowing their death sentence? Should it be illegal for them to do so until the child is competent? Until the child is of majority?

 

[patel2]

[Disclaimer: This is 100% hypothetical, I just thought of it the other day after seeing a patient with the disease and it really got me thinking...]

For those of you who do not know about Huntington's Disease, long story short, it can have a 50% likelihood of expressing itself in the child of a carrier of the gene, and it is a fatal disease that slowly destroys a person's brain. Terrible stuff.

Now hypothetically, if you were engaged to someone and found out he/she carried the gene and presumably you wanted kids in the future, would you feel the need to break up with that person? Would you adopt? Take your chances and have kids?

1. break up
2. date girl without huntingtons gene
3. ?????
4. profit

 

[BadHorse]

So someone with a 50/50 chance of passing on a terminal disease to their kids is never ethically justified in wanting to reproduce?

Why wouldn't you adopt? Do you have any idea what Huntington's is like? Why would you want to put your child through that?

Edit: My family has a history of Parkinson's and this is something to which I have devoted a good deal of thought. I can't imagine the selfishness that would be required to inflict such misery on a child just because of a desire to reproduce.

 

[Astarael]

So someone with a 50/50 chance of passing on a terminal disease to their kids is never ethically justified in wanting to reproduce?

I think that it would be hard to say for sure that they are or are not ethically justified in wanting to reproduce. If you know that the child has a 50% shot of getting the disease, what does that mean for your choice to procreate? Does it mean that you brought as much life into the world for as long as possible, or does it mean that you saddled a young person with an awful disease? It's not like there's a ton of ambiguity here-carriers have a 50/50 shot of passing it on (unless they're homozygous, which would just be awful), and the disease hits everyone, and there's no cure...

Actually, that would be an interesting reformulation of this problem. If you were homozygous for the mutation that causes Huntington's, would it be appropriate for you to reproduce?

I think a much more interesting dilemma is, should they choose to reproduce naturally, do the parents have the right to test their child for the HD gene? Do they have the obligation? Should the child have to grow up knowing their death sentence? Should it be illegal for them to do so until the child is competent? Until the child is of majority?

This is a great post, and all of the issues raised here are much more likely to come up in real life (at least for the next few years until genetic testing is old enough that people routinely figure out they have it at an early age).

 

[iqe2010]

you never know until you try!

But in all seriousness I wouldn't even want to go through the pain of having a sick child. I would use another person's egg..

 

[WhizoMD]

PGD. This isn't really an issue anymore if you know the person is a carrier. The only dilemma here is the whole dieing young thing.

 

[apumic]

Just to clarify, it's not really as if the parent is a carrier. The parent would HAVE Huntington's since it's dominant, so the whole addition of the parent dying early adds to the whole ethical debate.

My thought exactly when I saw the title of this thread: "Wait... isn't the HD gene dominant?"

So... it really makes things difficult in that this means my wife would die quite young. It'd be a tough thing to consider.

 

[kexy]

Also, to all the people who talk about whether it's ethically justified to procreate knowing there's a 50/50 chance of passing on a serious, terminal genetic disorder.... There is a common argument that it's not possible for you to harm your child by giving them the HD gene. There is no way that that same child, say Sally, could ever have existed without the gene. It's not like there was ever a choice between HD Sally and HD-free Sally; rather, it was only a choice between HD Sally and some embryo with a different genetic code; i.e. some other child.... Unless we believe that HD is a condition so bad that it makes life not worth living, we cannot logically conclude that HD Sally was harmed by being brought into existence.

Of course, there are other ways to condemn parents with the HD gene who reproduce without PGD; we can commit ourselves to principles like, "it is wrong to bring into existence the worse of two possible lives," or "parents have an obligation to make reasonable efforts to give their prospective children the best possible lives," or, "it is morally bad to act in ways that bring about more suffering." But it doesn't always make sense to speak about these dilemmas in terms of harm done to the child.

 

[Monocles]

Rationally speaking, I wouldn't necessarily break up with the person, but I'm probably not going to marry and have children with them.

Realistically speaking, I hope to never be in that situation because I wouldn't be able to make that decision. I think love makes you stupid and blind at the same time. Sitting here in front of my computer right now, it's easy for me to say "well, I obviously wouldn't marry her", but I feel like for people who are actually in this scenario, it's a much tougher decision.

Very thought provoking post.

 

[BadHorse]

Also, to all the people who talk about whether it's ethically justified to procreate knowing there's a 50/50 chance of passing on a serious, terminal genetic disorder.... There is a common argument that it's not possible for you to harm your child by giving them the HD gene. There is no way that that same child, say Sally, could ever have existed without the gene. It's not like there was ever a choice between HD Sally and HD-free Sally; rather, it was only a choice between HD Sally and some embryo with a different genetic code; i.e. some other child.... Unless we believe that HD is a condition so bad that it makes life not worth living, we cannot logically conclude that HD Sally was harmed by being brought into existence.

Of course, there are other ways to condemn parents with the HD gene who reproduce without PGD; we can commit ourselves to principles like, "it is wrong to bring into existence the worse of two possible lives," or "parents have an obligation to make reasonable efforts to give their prospective children the best possible lives," or, "it is morally bad to act in ways that bring about more suffering." But it doesn't always make sense to speak about these dilemmas in terms of harm done to the child.

Thanks for assuming I didn't understand that very, very basic principle. And taking two paragraphs to explain it. Let's just assume that when I say you're giving your child a disease without hope or recourse, I'm doing something rhetorical.

 

[slatermd]

It's not like there was ever a choice between HD Sally and HD-free Sally;

I paid extra for HD Sally. 1080p





Ignore me. I'm not actually participating in this discussion.

 

[OneOfShempsKids]

You should ask Dr. Foreman. He would know.

That better not be a spoiler.

 

[kexy]

Thanks for assuming I didn't understand that very, very basic principle. And taking two paragraphs to explain it. Let's just assume that when I say you're giving your child a disease without hope or recourse, I'm doing something rhetorical.

Wow dude didn't mean to offend... it wasn't something I'd ever known about before taking medical ethics, and I just thought it was relevant.

EDIT: Also, if you think Huntington's is truly so terrible that it makes life not worth living, then you're perfectly justified in thinking it's a harm to the child. I'm not arguing that parents should go around passing on Huntington's, I'm just saying that for those of us who don't think HD is so bad as to make nonexistence preferable, the discussion can't really logically be couched in terms of harm to the child; it needs to be couched in terms of obligations of parents.

 

[BadHorse]

Wow dude didn't mean to offend... it wasn't something I'd ever known about before taking medical ethics, and I just thought it was relevant.

EDIT: Also, if you think Huntington's is truly so terrible that it makes life not worth living, then you're perfectly justified in thinking it's a harm to the child. I'm not arguing that parents should go around passing on Huntington's, I'm just saying that for those of us who don't think HD is so bad as to make nonexistence preferable, the discussion can't really logically be couched in terms of harm to the child; it needs to be couched in terms of obligations of parents.

No offense, sorry I'm in argument mode for some reason. This is a bit of a hot topic for me.

 

[LizzyM]

First, if you are about to make a vow involving "in sickness and in health", you should think about what the future holds. Most of us can't see ahead but barring a catastrophic event, a person carrying the gene for Huntington's disease (HD) is going to suffer a long, slow deterioration with the strong possibililty that middle-age might be spent in an institutional setting. So, even setting aside the question of offspring, do you love him/her enough to accept responsibility for the care that will be necessary at a relatively young age and the corresponding loss of companionship?

Does the HD carrier want children? Do you both agree about pre-natal genetic diagnosis and disposition of affected pregnancies? (If the carrier is a "she" who decides against termination, you are both husband and father to HD afflicted individuals over your lifetime. Even if only unaffected children are produced (or adopted), there is a real possibility that you will be raising the children alone as your spouse is institutionalized and dying.


Here's a more interesting question: You are a typical college-age woman in love with a guy who tells you that his parent has HD. Furthermore, your beloved has chosen, at this point, not to be tested. Do you break up? If you eventually have a bun in the oven, will you have prenatal diagnosis done knowing that a positive prenatal test for HD will reveal something about the baby's father that he does not want to know (his own carrier status)?

 

[kansaskid]

Here's a more interesting question: You are a typical college-age woman in love with a guy who tells you that his parent has HD. Furthermore, your beloved has chosen, at this point, not to be tested. Do you break up? If you eventually have a bun in the oven, will you have prenatal diagnosis done knowing that a positive prenatal test for HD will reveal something about the baby's father that he does not want to know (his own carrier status)?

That is interesting. I think that I would want to have the prenatal analysis done. I would have a long conversation with the father of course and hope that he supported my decision. If he would strongly object I would take his thoughts into consideration and be open minded. Ultimately I think the choice to not do the analysis would be irresponsible and our relationship would be seriously compromised if he continued to not agree. I think I would get the test. If negative, nothing has changed. If positive, everything has. I would ask the father if he wanted to know the results. If he said no, I would keep the information to myself and just have that knowledge. It would probably hurt our relationship eventually. I think the issue for me is that I would have a hard time being with the kind of man who didn't want to know and it brings up all sorts of other personality clash issues!

 

[5280]

First, if you are about to make a vow involving "in sickness and in health", you should think about what the future holds

You lost me right there. Marriage is a sham.

 

[Lokhtar]

I wouldn't break up. I wouldn't have the kid though. If I and my wife wanted kids, we'd just adopt. There're thousands of children out there who don't have a home.

 

[Lokhtar]

As for LizzyM's condition, I'd respect that person's right not to know, but I wouldn't have children with that person until I knew.

 

[LizzyM]

You lost me right there. Marriage is a sham.

Well, the initial premise was that you were engaged to someone with asymptomatic HD. Engaged means planning to be married.

That is interesting. I think that I would want to have the prenatal analysis done. I would have a long conversation with the father of course and hope that he supported my decision. If he would strongly object I would take his thoughts into consideration and be open minded. Ultimately I think the choice to not do the analysis would be irresponsible and our relationship would be seriously compromised if he continued to not agree. I think I would get the test. If negative, nothing has changed. If positive, everything has. I would ask the father if he wanted to know the results. If he said no, I would keep the information to myself and just have that knowledge. It would probably hurt our relationship eventually. I think the issue for me is that I would have a hard time being with the kind of man who didn't want to know and it brings up all sorts of other personality clash issues!

You would just tuck away the information that both your baby daddy and the fetus have HD? What would be the point of knowing that the fetus has HD? Would you choose to give birth? If not, wouldn't terminating the pregnancy make it obvious to "him" that he has the HD gene? If you chose to give birth, you would be holding this information about your child. As the child's dad deteriorates, would you continue to keep the secret about the child's own future?

 

[redsquareblack]

would you continue to keep the secret about the child's own future?

What of the child's right to choose whether or not he/she even wants to know?

 

[acb88]

I love this kind of stuff (despite the morbidity). Was seriously considering becoming a genetic counselor for a while.

Why wouldn't you adopt? Do you have any idea what Huntington's is like? Why would you want to put your child through that?

Edit: My family has a history of Parkinson's and this is something to which I have devoted a good deal of thought. I can't imagine the selfishness that would be required to inflict such misery on a child just because of a desire to reproduce.

While I Understand completely what you are saying (I too want to adopt due to multiple genetic conditions in my family), it's not so black and white as you would like to think. There are many people who want biological children so badly that they will do anything to get them, despite the harm it may cause to themselves and their offspring (I personally know a woman with ovarian cancer who absolutely refuses to get a hysterectomy because she refuses to not carry her own biological children. I feel this is crazy and stupid, but who am I to judge). Luckily, there are options, such as IVF and PGD where you can screen embryos and only implant the ones that don't have the HD gene. Hopefully there will be insurance coverage in the future for these types of procedures for terminal illnesses, as they can be extremely costly and unaffordable for the average family. There is also a chance that there could be treatments for HD by the time the child becomes symptomatic, but I personally would bank on that.

Back to the OPs original question, before even discussing children with the fiance, I feel you need to determine if you love this person enough to marry them, despite the fact that they WILL ultimately neurologically deteriorate and die between the age of 40-50. Will you be able to handle that? Should you even bring a child into this world knowing full well that one of it's parents will die at a young age and that you will have to care for it on your own?

These are tough situations, but looking at it from a physician's standpoint, no matter your own personal feelings, the ultimate decision should come from the patient alone.

 

[Iso4ane]

There is another side to this question that has not quite been mentioned yet. What if you where the carrier (and you knew it), would you reveal it to your spouse and how would that change your decision on having kids. As now it won't be your spouse fault per se but your own.

 

[Kaustikos]

There is another side to this question that has not quite been mentioned yet. What if you where the carrier (and you knew it), would you reveal it to your spouse and how would that change your decision on having kids. As now it won't be your spouse fault per se but your own.

? Unless you're an *******/selfish prick, you'd better tell your spouse/significant other what's going on.

OP - no kids and I don't foresee myself being with that person if she told me that she was a carrier, either.

Lizzy - Like with OP, I really don't see myself handling that well so I'd end it.

 

[LizzyM]

What of the child's right to choose whether or not he/she even wants to know?

I'm glad you raise that point; that's why I brought it up.

 

[Scumbag]

depends if she's hot, amirite?

 

[Pons Asinorum]

depends if she's hot, amirite?

3 posts and taking sharp turn towards trollsville already. Hot out of the gate, my friend.

 

[bashir]

In answer to the OP's question, I do think it would be mind-bogglingly stupid to intentionally procreate when any child of yours would have a 50% chance of having a fatal disease as terrible as Huntington's. I'm tempted to use the word "unethical," but that sounds so absolute, and really there's a whole spectrum of good idea vs. very very bad idea when it comes to weighing the genetic risks of having children, and I think reasonable people can disagree about what constitutes an acceptable risk. Huntington's is all the way on one end of the spectrum though, both in the likelihood of the child suffering from the disease and the amount of suffering that would be caused. I don't know where the line is, but I strongly feel that the scenario presented is way past it.

I don't know anything about PGD, but if there's a way to only implant embryos that don't carry the gene, I would be ok with that. If there's a genetic test that can be done on a fetus in the first trimester, I would even be ok with getting pregnant and aborting if the fetus carries the gene. Just getting pregnant, having the baby and crossing your fingers? No. Not ok.

Probably the best solution if your spouse is a carrier of the gene and you both want to raise children would be to adopt older children. That way they will be grown by the time your spouse starts to deteriorate, and the pain of watching a parent suffer and die would be (arguably) outweighed by at least having a family, rather than growing up in the foster care system.

As for staying with someone who is a carrier of the gene, I say awesome, go for it, good for you. I think it's definitely the "right" thing to do if you really love them, but I don't know whether I could do it. If the love of my life had a parent with Huntington's, I would respect their decision not to find out if they carry the gene, but I would make it clear early on in the relationship that we would not be having biological children together. Period.

 

[typhoonegator]

Just FYI, while HD is dominant, it is dependent on a CAG triplet repeat in the huntingtin gene, and therefore displays the phenomenon known as genetic anticipation. Triplet expansion is more likely to occur during spermatogenesis than oogenesis.

Therefore, if your future spouse is female carrying 28-35 CAG repeats (intermediate expansion) in the poly-Q region, she is unlikely to develop the HD phenotype, and less likely to pass an expanded CAG huntingtin gene to her offspring. Alternatively, if your future spouse is a male carrying 28-35 CAG repeats, he is also unlikely to develop HD symptoms, but he is more likely to pass a fully-penetrant huntingtin gene to his offspring, resulting in the HD phenotype. Only if your spouse has a highly-expanded trinucleotide repeat is the offspring 50/50 for the phenotype.

So it isn't 50/50, and it depends somewhat on the sex of your future spouse. Not to complicate your ethical discussion or anything...

 

[bashir]

I don't purport to be an expert in genetics or to even well-versed enough to fully understand your explanation, typhoonegator, but it did serve to remind me that my understanding of the manner in which HD is passed down and expressed is vastly oversimplified, so I appreciate it. 🙂 I do think the nitty gritty details are relevant to an ethical discussion because risk management is one of the principles at the core of the issue.

 

[cowme]

Just FYI, while HD is dominant, it is dependent on a CAG triplet repeat in the huntingtin gene, and therefore displays the phenomenon known as genetic anticipation. Triplet expansion is more likely to occur during spermatogenesis than oogenesis.

Therefore, if your future spouse is female carrying 28-35 CAG repeats (intermediate expansion) in the poly-Q region, she is unlikely to develop the HD phenotype, and less likely to pass an expanded CAG huntingtin gene to her offspring. Alternatively, if your future spouse is a male carrying 28-35 CAG repeats, he is also unlikely to develop HD symptoms, but he is more likely to pass a fully-penetrant huntingtin gene to his offspring, resulting in the HD phenotype. Only if your spouse has a highly-expanded trinucleotide repeat is the offspring 50/50 for the phenotype.

So it isn't 50/50, and it depends somewhat on the sex of your future spouse. Not to complicate your ethical discussion or anything...

Nailed it.

 

[kansaskid]

Well, the initial premise was that you were engaged to someone with asymptomatic HD. Engaged means planning to be married.



You would just tuck away the information that both your baby daddy and the fetus have HD? What would be the point of knowing that the fetus has HD? Would you choose to give birth? If not, wouldn't terminating the pregnancy make it obvious to "him" that he has the HD gene? If you chose to give birth, you would be holding this information about your child. As the child's dad deteriorates, would you continue to keep the secret about the child's own future?

What of the child's right to choose whether or not he/she even wants to know?

Yeah, I considered the issue of the child's right to know. Honestly if I was personally in this situation I would probably chose to terminate the pregnancy. In all actuality, I'd want to pursue adoption in the first place, but if I became pregnant and had the test done to find a positive result, I would most likely terminate. Which of course would alert the father of his status and might jeopardize the relationship, a risk I'd just have to take. I wouldn't anticipate keeping the HD fetus, but if I got to the point of termination and couldn't do it for whatever reason, in that scenario I would keep the information secret out of respect for my husband's choices.

When it became clear that my husband was deteriorating I would discuss with my child the illness and the consequences. I would ask my child if s/he wanted to know their own status. I would let them know that I would be as honest with them as they wanted me to be about it. Presumably we're a young couple and my child is old enough to understand the issue at hand by the time my husband's condition is obvious. If they wanted to know, I'd tell them. If not, I wouldn't.

Pretty unpleasant situation all around honestly. I've got the early onset Alzheimer's genes in my family and I haven't gotten the genetic test. Although there's a more subjective certainty than Huntington's with Alzheimer's, it is possible to find out if I have the gene or not and I'm choosing to not look into it unless my mother starts showing symptoms, which thankfully she hasn't yet.

In the above scenario, husband with uncertain status, we would adopt and that would be the end of the story. There's no need to put my family through the heartache that would come from me having to carry that secret or needing to go through the difficult decision making process to abort. Adoption is a great option for parents who don't have possible life-threatening genetic diseases to pass on, so it makes a perfect opportunity for those that do.

 

[Signifier]

Childfree

 

[LizzyM]

I'd want to pursue adoption

I'm no expert in this area but to adopt in my state, a couple or individual must be evaluated with what is called a "home study" and approved as foster parents before becoming eligible to adopt. A home study includes collection of the prospective parents medical histories and may include medical exams. I highly doubt that someone facing premature death preceeded by a significant period of disabilty due ot HD would be allowed to adopt. IVF with donor sperm (or a donor embryo or donor egg depending on the situation) might be a way around the adoption barrier.

 

[Kaustikos]

Just FYI, while HD is dominant, it is dependent on a CAG triplet repeat in the huntingtin gene, and therefore displays the phenomenon known as genetic anticipation. Triplet expansion is more likely to occur during spermatogenesis than oogenesis.

Therefore, if your future spouse is female carrying 28-35 CAG repeats (intermediate expansion) in the poly-Q region, she is unlikely to develop the HD phenotype, and less likely to pass an expanded CAG huntingtin gene to her offspring. Alternatively, if your future spouse is a male carrying 28-35 CAG repeats, he is also unlikely to develop HD symptoms, but he is more likely to pass a fully-penetrant huntingtin gene to his offspring, resulting in the HD phenotype. Only if your spouse has a highly-expanded trinucleotide repeat is the offspring 50/50 for the phenotype.

So it isn't 50/50, and it depends somewhat on the sex of your future spouse. Not to complicate your ethical discussion or anything...

I assumed that when we said you carried the HD gene, you had the pre-requisite number of repeats to eventually develop Huntingtons. So I presumed that the person had more than the 35 CAG repeats to eventually have it which made my choice easier.

 

[Lokhtar]

I'm no expert in this area but to adopt in my state, a couple or individual must be evaluated with what is called a "home study" and approved as foster parents before becoming eligible to adopt. A home study includes collection of the prospective parents medical histories and may include medical exams. I highly doubt that someone facing premature death preceeded by a significant period of disabilty due ot HD would be allowed to adopt. IVF with donor sperm (or a donor embryo or donor egg depending on the situation) might be a way around the adoption barrier.

If the system leaves a kid in an orphanage instead of giving him a loving home just because of that, the system is ludicrous. Orphanages, as a general rule, are terrible.

 

[MrLahey]

Can you test for the gene in the womb? Maybe within the first or second trimester?

 

[LizzyM]

Can you test for the gene in the womb? Maybe within the first or second trimester?

Yes, but if your affected partner is a woman, would you demand that she undergo the test (it is invasive and carries a risk of miscarriage)? would you demand that she abort an affected child? If your affected partner is a man, a fetus that tests positive reveals his status as well (if he doesn't already know it). Some people who may be carrying the gene don't want to know.

 

[ACSurgeon]

So someone with a 50/50 chance of passing on a terminal disease to their kids is never ethically justified in wanting to reproduce?

Given the quality of many parents (who give birth to kids with close to 100% chance of a miserable life), I think this would be the least ethically concerning type of parent😎

 

[alwaysaangel]

I would definitely break the engagement. It sounds cold, but I just don't think I could handle watching someone I love die a slow death. I'd rather rip it off like a bandaid.

I also ABSOLUTELY would not have children. I really want my own kids but I will not willfully pass on an un-curable, debilitating disease.

 

[eablackwell]

One of my past boyfriends found out that his mother had huntington's while we were dating, and in fact his mother's funeral was yesterday :-( it was very scary for him to find out that he had a 50-50 chance of dying a slow, horrible death, but I never would have dreamed of breaking up with him over that if i really thought we were meant for each other.

Adoption if nothing else, IMO. He specifically said he didn't want to know if he had the gene and he refused to have kids for fear of passing it on to them.