would you? This article seems to suggest that such a future may not be so far away…
This is one quandary I am glad not to have to face.
Technologies like this make me mostly angry.
I don’t blame my parents for my diabetes or any other health issue or disability I face. I’m grateful to them for being alive and raising me.
Facing health obstacles hasn’t been a walk in the park, but neither has it been a life-ruining experience. There are a lot of other difficult life experiences beyond health issues—and, what’s more, difficult health issues and disability can affect anyone, regardless of genetic predisposition. Those wishing to have a child need to be willing to accept and love that child regardless of what health obstacles they may face, and technologies like this are definitely not the way to foster that type of attitude.
I wish that more money was directed towards making society fully accessible, inclusive, and equitable (both physically and in terms of attitudes) rather than trying to rid society of our existence.
That’s just my middle-of-the-night two cents’ worth.
I agree with @Jen. For me this is a very easy.
I would never change the genetic makeup of my child. It would no longer be her. It would then be somebody else. That would be the equivalent of choosing not to have this child because she would have diabetes and instead choosing to have a different child.
My child deserves to have her life. The good and the bad. It is hers.
Many of the members here might not be here if “choosing” was fashionable.
I would never in a million years trade Samson for another kid and his life is not, in my opinion, any less worth living because he has this extra burden. We all have burdens and suffering in the world and he is so much more than his disease. But not everyone feels that way about their diabetes or their kids’ disease. And I’ve certainly met many parents who think what we have done – i.e. having another kid knowing that we have a genetic susceptibility to T1D – is irresponsible. So you would imagine people who feel you should never impart some genetic risk to your children would think embryo selection to avoid those traits is more responsible.
In any case this technology is coming. If it’s anything like other heritable diseases or traits (Down’s syndrome, spinal bifida, etc.), a lot of parents would choose to avoid those high risk genes. And that may have implications for the services available for people with T1D, the financial incentives to search for a cure and new treatments.
Certainly, I would do this if it were possible.
My wife and I have 6 boys. We have 6 boys because we’ve been trying …6 times…for AT LEAST one girl. That wasn’t in the cards for us. Instead, we have beautiful sons that we love, and we’d never trade for anything in the world. We could have done a procedure known as “micro-sort”, but we decided to just see if fate had it in the cards for us. So, what did we have? 1 boy who had cancer when he was 1 year old, 1 boy who is on the spectrum and 1 boy with T1 Diabetes. If we could have “selected” to NOT have these why would we have NOT done so? I’m sure my oldest son would have enjoyed not going through chemo / surgery and needing a blood transfusion after having his aorta nicked. I’m sure my autistic son would love to be like every other child. And I’m certain that Liam would enjoy NOT being stuck all the time. So, I would definitely do it because it would save money in the future and make my kids have an easier time with life. Life is tough enough without ANY medical issues to have to do it while having some chronic medical condition. I’m not saying that having a chronic medical condition makes it impossible to have a happy successful life, but why have that burden if it could be avoided / prevented?
And as far as the religious idiologies go…that has zero impact on me. I feel that if there’s any entity up there watching us, he or she would fully expect that we’d eventually be able to do these things; otherwise, we’d have been made any other animal without the ability to formulate the kind of intellectual thought processes that we find possible. So “playing God” is, I believe, fully expected of us and built into our DNA by any creator that may exist…if he/she/it didn’t want us to get to this point, they could have made it so that we were incapable to do so.
Also, I read your comments @TiaG about some people thinking you’re irresponsible for trying again after having a child with Diabetes. We also have family/friends that we’ve heard back about who have similar thoughts. Thank goodness we’ve never lived our lives giving two ***** about how people think about us. As long as we can financially support our family, we love our family, they have all their needs and some of their wants, we’re doing our job. We advise anyone who has problems with how we live to remove themselves from our lives. We don’t waste time/effort thinking about, or caring, about how others perceive, or think about us.
I love the thoughtful comments here, and the discussion.
It is wonderful being in a place where we can discuss such an incredibly difficult subject with so much tolerance and understanding between different points of view.
This part of our forum is very important to me
At the risk of this conversation moving into the “Gattica” area, i.e. only those with perfect genetic sequences will be selected etc.
I would point out that there are numerous studies showing the reduction in the down syndrome population both in the US and parts of Europe due to people aborting fetuses that test positive for Down’s.
Our technology is rapidly moving towards the ability to genetically screen and create embryo’s with the traits you want, and in the not so distant future the ability to fix the traits you don’t like.
As parents, many of us are amazed by the random miracle of our children, and there is something guttural that pulls at you when you think of adjusting things that might have changed not just our children’s diseases, but also inadvertently, their personality. I hope that we spend some time noodling the ethics of these treatments, in addition to the technology it takes to make them a reality.
If we could have “selected” to NOT have these why would we have NOT done so? I’m sure my oldest son would have enjoyed not going through chemo / surgery and needing a blood transfusion after having his aorta nicked. I’m sure my autistic son would love to be like every other child. And I’m certain that Liam would enjoy NOT being stuck all the time. So, I would definitely do it because it would save money in the future and make my kids have an easier time with life.
I wholeheartedly agree that, if I could wave a magic wand and spare Samson – the unique amazing individual child that is our living, breathing child Samson – from this burden I would do it in a heartbeat. The sort of moral/ethical issue I guess comes from the fact that this technology is not actually modifying existing embryos to remove an individual disease gene, but instead selecting NOT to implant embryos that have those risk factors. And T1D is not a single, clear-cut gene like Tay-sachs, which is invariably fatal in young childhood and you can see as a single genetic blemish that 100% destroys the life of a child (this to me is a more clear-cut situation where I’d be in favor). Instead T1D is polygenic, meaning that many genes contribute a small amount to the child’s risk, and those genes code for other attributes as well. So you are essentially selecting away from not just the disease risk but a host of other traits as well that you may not know even know about.
So instead of making life easier for the future Samson, I’d essentially be saying I’d rather not have Samson at all, but choose the other kid that might exist, who wouldn’t face that risk. That feels a bit like a betrayal of Samson to me.
In the end of course, it’s a bit of a contradiction me because obviously when I conceived I had no idea Samson would be Samson since he didn’t exist yet; and that would be true for any specific embryo, even if you did select for or against certain risks and traits. Still, some might see it as a referendum on your existing child, a subtle way of saying that their life is a little bit less worth living than other, healthier people, which I don’t feel comfortable with.
I’m not a masochist but I also do feel there is the potential for moral strength, redemption and increased joy that *can (but doesn’t necessarily) come from suffering, and so I don’t want my goal to be to spare my children absolutely all suffering either. I would never, ever have chosen for Samson to get this disease. I cry about it still. But I also know he has grown and become stronger, even at this tender age, because of the adversity he’s faced, and I hope against hope we can use it to make him a better, more resilient, more empathetic person than he otherwise might have been.
As a result, he will grow to be tougher, more resilient, more creative, more flexible, more independent, more self-sufficient, more compassionate, more caring, and more persistent. And perhaps more stubborn.
there are all kinds of unsettling ethical implications involved in these types of questions to which there just are no right answers.
I would say to the parents of kids with diabetes that yes while it is a very frustrating and sometimes challenging situation it is really not that bad in the grand scheme of things that people go through in their life. It’s not limiting of their potential, painful, doesn’t reduce their intelligence or ability to relate to others… and is highly manageable and treatable. Of all the bad lifelong health conditions that can happen to someone, ill take diabetes over many others…
I can comprehend reasonable conversations about whether a child’s life is worth being brought into the world if they’ll know nothing but horrible pain and suffering, I can assure you from experience that diabetes is not a sentence of that by any stretch of the imagination
I might with diabetes, but given that the genetics for that are so ambiguous, I don’t think it would apply easily at least for me/my family, since we have no one else with T1 and hardly anyone even with other autoimmune diseases. Diabetes has a very low rate of inheritance unless you have multiple autoimmune disorders, and many of the genes that have been linked to diabetes increase risk for it but do not necessarily determine that you’ll get it. However, as someone with a genetic connective tissue disorder that is dominant in inheritance (meaning 50% of my biological offspring would have it, regardless of the other parent’s genes) and has caused me to have chronic pain and other problems, I would absolutely select embryos without the disorder if possible. I would actually feel unethical not doing that if it were an option, and all of this is one part of why I’m undecided on having biological kids.
It’s entirely a different question, IMO, than asking if I’d rather have never been born or wouldn’t want an existing kid with the problems—in this case we are talking about making this judgment call before I would consider the embryo to be a person.
Ask almost any diabetic person if they wish they had not been born. I think you will find that almost all would chose to exist. Who are we to deny any embryo the chance at life.
If we follow this logic we might as well be euthanizing genetically undesirable babies at birth.
I don’t think this is really the question though—in a realistic situation, this would be done where you are choosing among a set of viable embryos, so often some of them are not going to be implanted either way. It’s just a question of which ones. People already do this for other health problems and abnormalities. If there were a gene that definitely caused T1 (which again, I think for most people won’t happen anywhere close to that level of certainty) and parents had choices between embryos with it and without, I’d be all for them choosing the ones without. I can think that and be glad to have to been born despite my health problems. Also not implanting an embryo is not logically followed by euthanizing an infants, for many reasons.
Had this approach been applied in the past how many of us would be here today. How many of us would be discarded human potential.
I just find that argument really unconvincing—who knows what would have happened. Maybe the embryo who would have been selected instead of you would have cured cancer. Maybe they would have been a murderer. It probably would have been about even in the end, in terms of human potential, to be honest.
I find your argument as equally unconvincing. The if argument can be made in reverse. What if the embryo that was destroyed was the person that was destined to do great things. What if it were Steven Hawkings one of the greatest mind of our time that was left in the dish because he was destined to succumb to the disease that has robbed him of his body.
I don’t see this issue from a society standpoint, I see it from personal standpoint. The choice of who lives or dies should be natures choice not a decision made by humans.
Certainly wouldn’t have selected Beethoven’s embryo either if we knew it was prone to deafness. Some things are just better left to chance and nature… even if it causes us hardships
didn’t Beethoven go deaf from lead toxicity from wine casks though? Still, see your point…obviously we can’t predict how the life of an embryo will turn out, regardless of its genetic risks and makeup.