Self-imposed ethics of passing on bad genes

[DianaCox]

I've been musing on this for a while, given several people in my life who reproduced (or want to) despite being likely to be passing on "bad genes" along with the good ones.

If one has a serious predisposition to a miserable disease that could seriously affect their child's life, do you believe they should consider adopting instead? Or using alternative eggs/sperm/both? Where does the ethical concern cross the line to eugenics?

Does it matter what the miserable disease is? A disease that causes mental retardation (a relative had 6 or 7 kids [I've honestly lost track], several of whom had premature closure of the growth plates of the skull, and let's just say none of them ended up being rocket scientists)? Horrible teeth which causes lifelong problems (Charles passed this mutation on to at least one of his kids - when the teeth go bad from lack of enamel, pulling them involves surgery because they also have hooked roots)? Blindness? Cancer? Huntington's disease? Drug addiction? Morbid obesity?

I'm not sure how I feel about it myself - it's such a slippery slope.

 

[bearmom]

I'm not sure how I feel about others, but for me, this was a factor in my not having kids. Not the whole reason, but it definitely played a role. Not quite related, but it then also contributed to the end of my first marriage, because I assumed when we married, we'd have kids (we were very young, and planned on waiting a while). He definitely wanted kids. As years passed, I started having doubts about several things, one being his damaged childhood, with no decent parent role models, and the other was my learning that I carried the gene for cysctic fibrosis. He was very bitter about my changing my mind about kids over 15 years, and I don't really blame him.

My niece has CF, so my getting those results on genetic testing were no surprise (since my sister, the girls mother obviously carried the gene, so at least one of our parents had to carry it). Both parents have to carry the gene to produce an offspring with CF, and then there is about a 1 in 4 chance of having CF, but her brother without CF, still carries the gene, and has decided no kids. Today, average life expectancy with CF is 37 years (she is now 35) but when she was diagnosed, we were told that making to into adulthood at all was the best we could hope for. I do think she is not as severe as many of the other CF patients we now know, but it's work, and she was lucky to have a vigilant mother that was on top of things, before the internet made it much easier for us. She has had the best medical care possible. I would not think twice about anyone that decided to have kids knowing they carried the gene, as it's not a guarantee, but if it were, I may feel differently.

So, after saying I wan't sure how I felt about others, I guess it's a lie, because this same niece with CF, decided to have a baby when the baby bug was in overdrive, and now has a 4 years old child who is on the spectrum. I really struggled to bite my tongue at the beginning knowing her health was so compromised that carrying a baby was a bad idea, and that she took so many prescriptions, none of which could be stopped during the pregnancy that there was plenty of unknown risk to the baby. Then you have the part where you are not really well enough to take care of a kid, and it's unlikely that you will be alive long enough to raise the child. I love them to death and would do anything to make their life easier at this point, but not much of what is going on there is fixable.

I've also been pretty upset that another niece had a baby recently not long after "getting clean", with the addict father that was also supposedly clean at the time. He pretty much only kept that up long enough to get her pregnant and make it a few months into the pregnancy, and he's been using again ever since, and now, she is 23 with a 1 yo, with no decent job or education to help her get one, and saddled with an infant making it 50 times harder to get established. She is still not using, which gets to be less of a worry every month/year that she remains clean, but I do worry that when reality hits that life is really ******* hard (especially how she's set it up) that she'll be temped to use again. I've alienated much of this side of the family voicing my opinion on these things like "Be off the drugs longer. Take the time to go to college. Have a job so you can raise the kid", etc. I really am judgey and opinionated, and despite knowing my opinion is unwelcome and will leave everyone mad at me, I can't help but put it out there because I love them. If they were total strangers it would be so much easier to take.

As far as I'm concerned, I am always right , but realize that if everyone waited till everything and everyone was ideal to have babies, then most of us wouldn't be here. And while I swear I'm not ready for the tin hat club, thinking about stuff like this, makes me worry about things like what if our current government thinks about this. I don't think they're far from it, certainly not Bannon.

 

[DianaCox]

I can argue on both sides. I was wondering what others think about.

 

[hilary1617]

It's so complicated and personal. I only know from my own experience that every time my son suffers, I feel guilty for having passed along my hereditary challenges, but every time he shines and smiles, I think "that's my boy"! I'll gladly take the bad with the good. Plus, modern medicine will progress as the child grows, allowing for new and better treatments to come along during his/her lifetime than those available at conception.

 

[Jbandmmomma]

The slope is way too slippery for this skeptical scientist with liberal leanings. I can easily draw the line for something like CF, but the others you list (particularly MObesity) I didn't draw a line on. If I had, I would not have children. I have a genetic tendency toward diabetes, and my husband is a Type II diabetic. We still had 3 kids, at "advanced parental ages". We gambled even though it was a genetic lottery, especially with respect to trisomy 21 and other disorders. We got "lucky", none of our kids had a trisomy or other known genetic disorder. We now have a 10 year old very intelligent, very high functioning autism spectrum kid. For four years, we had no idea this might be in our future. At age 5, we conceded that he had ADHD. By age 8.5 we were begging medical providers and therapists to help us figure out what else was going on and provide therapies/resources to actually HELP our kid. Had we known autism was in his future, would we still have elected to have this kid? Yes. He also has a charming personality, can be incredibly caring and thoughtful, and is extremely bright. Granted, his future possibilities run the complete spectrum. We are choosing to invest in him, provide him every opportunity to succeed that is within our reach, and remind him of his responsibility to be a contributer to society - all of which we do for his younger sisters also.
All that to say this. For my thinking, the slope is too slippery and the slide too easily into eugenics.

 

[Clematis]

I once read about a family, perhaps in a small town in Italy? that continues to have children for hundreds of years despite passing on a rare genetic disease to 75% of offspring that kills by the age of 40. There is no cure or treatment. I don't recall the disease -- I believe it involves an inability to sleep which quickly causes profound dementia and death. In the article the reporter asked a pregnant young couple WHY?? and they said "but our baby will have a good 35-40 years". I guess I can sort of see that reasoning. Sort of. But I am always aghast when I hear of pregnant women with a genetic disease that could affect their baby from birth.

Many inherited diseases do not show up until the next generation has been born. My sister was not diagnosed with bipolar until after I had my children but still I would not have considered not having children because of her dx. My son developed bipolar in his late teens. For 10 years he has said he would never have a child and risk passing this on. Recently, however, he has said maybe if he fell in love with a woman with bipolar, they could have a bipolar child and know how to raise it. I was speechless. It damned near killed me dealing with his episodes -- I can't imagine being of any use to him if I too were suffering from bipolar.

 

[DuodenalSwitchaRoo]

This makes me sad It makes me feel like I shouldn't have been born as the genes I got were ******

 

[Clematis]

@DuodenalSwitchaRoo You have some pretty great genes! You're kind and clever and have incredible determination which has inspired so very many. We all have some crap genes. Gene pools are a dangerous swim -- and no life guards.

 

[DianaCox]

The Orthodox Jews in NYC had for many years had a genetic screening and registration system for children. When they become teenagers, they give DNA samples, which are analyzed for many diseases, and then the kids are given an ID number. Before they go out on any dates, they are supposed to both submit their numbers to the organization, and then they are told whether or not to date.
https://en.wikipedia.org/wiki/Dor_Yeshorim

What do you think about THIS version of self-imposed eugenics?

The disease you are thinking of is this: https://en.wikipedia.org/wiki/Fatal_familial_insomnia - but 50%, not 75%, of the children of one carrier will have the disease, unless both parents are carriers.

 

[k9ophile]

In general, I have problems with knowing too much. As in I see those ad for Ancestry.com and am mildly curious. Yet I'm paranoid enough to believe that the results could be used for nefarious purposes. And I've never been able to see the fine nuances in nature versus nurture.

I don't have a problem with the registry you cited because it's voluntary.

 

[bearmom]

I would have no issues with a registry like that, as it would have ensured I didn't get matched with a CF carrier, or anything else that they look for 2 parents to carry the gene, but like Liz, only because it's voluntary. If required, then it would feel more like eugenics.

Duodenalswitcharoo - I hope you aren't actually feeling bad. There is no such thing as a flawless human. This actually doesn't seem like that weird of a thing to ponder to me, as I contemplate where is the line that I think it would be better to have no been born, when I've had several opportunities in the last few years at the other end of someones life, whether long, or shortened, when we were considering again where is that line. The one we cross between it being worth it and not.

 

[DianaCox]

I don't know how voluntary the Dor Yeshorim database is for the kids, because their parents sign them up at 13 and the very regimented Orthodox Jewish society they are in demand that they use it. Many of these kids, especially the girls, are married off by age 18.

 

[DuodenalSwitchaRoo]

I would have no issues with a registry like that, as it would have ensured I didn't get matched with a CF carrier, or anything else that they look for 2 parents to carry the gene, but like Liz, only because it's voluntary. If required, then it would feel more like eugenics.

Duodenalswitcharoo - I hope you aren't actually feeling bad. There is no such thing as a flawless human. This actually doesn't seem like that weird of a thing to ponder to me, as I contemplate where is the line that I think it would be better to have no been born, when I've had several opportunities in the last few years at the other end of someones life, whether long, or shortened, when we were considering again where is that line. The one we cross between it being worth it and not.

In my family there are mental health issues, rampant super morbid obesity, cancer, diabetes, arthritis, autoimmune issues, drug and alcohol addiction and the gene that can mean babies are born intersexed. So yeah I feel kinda sad/bad as according to this line of thinking I should be put down like a horse and spare the resources for the super gene people. I know it wasn't meant like that, nor was it personal and it was just a point for discussion, but damn I tick most of the undesirable boxes here.

It does make me ponder a lot though as I've heard over and over regarding mate selection that evolution dictates you pick a partner with good genes. LMFAO! My hubz has awesome genes and super clever genes too. WTF is he doing with ME?!

I'm awesome anyways, but damn, this post stings a little as I DO tick the boxes that means my parents shouldn't have had kids. And out of all 4, I turned out the best lol.

 

[hilary1617]

Abraham Lincoln had Marfan's syndrome. There's Stephen Hawking, Hellen Keller, Stevie Wonder, and numerous people, who like FDR, were inflicted with disease or injury during the course of their lifetimes, yet still enriched our society...

I doubt that database would have allowed me to date anyone. I have an extra lumbar vertebrae, inverted sternum, scoliosis, supernumeraries, splenules, lipoedema, malrotated kidney, and a familial predisposition for neuroendocrine tumors and obesity (Cushing's). I carry the CF gene. That sort of database wouldn't consider that I'm also a descendant of Benjamin Franklin, Horace Greeley and Bronson Alcott, all of whom were darn productive members of the community in their day. Surely they passed along some decent genes counterbalancing those that gave me physical deformities? I even can claim some superpowers: Few are as well-equipped as I am when it comes to sleeping, floating and transferring static electricity.

I'm glad to be here, flaws and all. Glad you all are here with me!

 

[DuodenalSwitchaRoo]

Abraham Lincoln had Marfan's syndrome. There's Stephen Hawking, Hellen Keller, Stevie Wonder, and numerous people, who like FDR, were inflicted with disease or injury during the course of their lifetimes, yet still enriched our society...

I doubt that database would have allowed me to date anyone. I have an extra lumbar vertebrae, inverted sternum, scoliosis, supernumeraries, splenules, lipoedema, malrotated kidney, and a familial predisposition for neuroendocrine tumors and obesity (Cushing's). I carry the CF gene. That sort of database wouldn't consider that I'm also a descendant of Benjamin Franklin, Horace Greeley and Bronson Alcott, all of whom were darn productive members of the community in their day. Surely they passed along some decent genes counterbalancing those that gave me physical deformities? I even can claim some superpowers: Few are as well-equipped as I am when it comes to sleeping, floating and transferring static electricity.

I'm glad to be here, flaws and all. Glad you all are here with me!

Wanna hook up and have kids? haha I joke I joke.

Im glad we are here too. Im a hot mess but life isn't perfect for most people