Pregnancy and Genetic Disease

February 19, 2006 10:23 PM

Responsibility filter: Is it responsible to have a child when there is a high percentage chance of passing on a genetic disease?

My husband was just diagnosed with type 1 diabetes (at 34 yrs old). His mother is also type 1 (from an early age), and her sister(also early age) died from it in her 30's. My husband and I had been trying to get pregnant before the diagnosis. My research indicates that at minimum, there is a 1 in 17 chance of a child developing type 1 diabetes when the father is type 1, and the chances are unknowably more when there is a high number of cases in the family. I am very concerned about passing on this terrible disease, but my husband sees no reason to be worried. He also is not interested in getting genetic testing or talking to a genetic counselor. So, is it responsible to just get pregnant?

posted by maelanchai to health (42 comments total)

You are asking a crowd of strangers, so I'd guess you're asking about social mores.

The answer is that is completely within common American mores to go ahead and have that child. Americans have children regularly under much worse odds.

I have no idea about other countries, having not lived in one long enough to speak about their morals.
posted by tkolar at 10:30 PM on February 19, 2006

(I should add that I would happily take the risk you're talking about. My hypothetical kids are going to end up with genetically based depression and addiction problems, which makes me think adoption is in my future)
posted by tkolar at 10:32 PM on February 19, 2006

I don't think there's really a black or white answer here. However, consider the following:

Diabetes is far more treatable these days than it was in the past - it is now more of an annoyance than a debilitating disease to most. That's not to soften the impact of how tremendous it can be for some people - certainly some do still have a rough go of things with it, but for many, it is a livable thing.

It is unfortunate that your husband doesn't seem onboard with seeking out all the info that would make you feel more comfortable.

I think the only way you could argue that having a child would be "irresponsible" is if you do not consult a doctor and get as much information as you can on the potential that your child may have it. As long as you are willing to accept the risk, and accept that in the worst case scenario you may have to deal with having a child who has this disease, and you'll need to be supportive through it - I don't see a problem.

I don't know enough about your relationship with your husband to say whether or not you should just consult your own doctor and ask questions with or without your husband's involvement - some husbands might be offended, some would not. However, having a child is a decision two people need to make together, and like sex in the first place, both need to consent to it and want to do it. I say do not go through with anything until you feel comfortable with it - which may require consulting doctor(s).
posted by twiggy at 10:36 PM on February 19, 2006

While I agree in general principle with the previous posters, think about all those unlucky Chinese girls out there that have nothing to look forward to except a Nike factory.
posted by frogan at 10:47 PM on February 19, 2006

He also is not interested in getting genetic testing or talking to a genetic counselor.

Taking a risk is one thing. Not giving a crap about a risk is another.

Something's not right here.
posted by Saucy Intruder at 10:49 PM on February 19, 2006

I can't think of anything more reprehensible than knowingly bringing a child with physical or mental defects into the world. Sorry to be so harsh, but it's a hard, old world out there, and life's tough enough without starting out with a handicap.

And, frankly, I have to wonder if your husband is ready to shoulder the responsibility of being a parent.
posted by SPrintF at 11:17 PM on February 19, 2006

I agree with Saucy and SPrintF; it seems strange your husband has a head-in-the-ground attitude about the risks....I wouldn't even adopt unless I was sure my partner was as informed as I was about the responsibilities/consequences of having a child/children.
posted by Radio7 at 11:31 PM on February 19, 2006

The genetics of diabetes is actually extraordinarily complex, and as far as I know, there are no readily available genetic tests to accurately assess the risk of passing it on in terms of odds. And if such tests did exist, all you would have is a number, with essentially no way to change the outcome.

So step back and ponder this for a moment. There is some percentage out there X. The answer to your question depends on how badly you want children, how badly you don't want children with diabetes, and this number, X. How high does that number need to be? If it were 100%, would you decide never to get pregnant? What if it were 50%? Think through a few possibilities.
posted by drpynchon at 11:38 PM on February 19, 2006

I have one raised eyebrow.
posted by I Love Tacos at 11:42 PM on February 19, 2006

Type I diabetes is a very serious disease, so doing a little due diligence, such as seeing a genetic counselor, is the least you should do before getting pregnant. But if I was told by the genetic counselor that my child had about a 17% chance of getting a disease that routinely leads to amputation and/or blindness, I'd choose adoption or donor sperm.

Also, I hope replies to this post are making a distinction between the types of diabetes.
Type I = pancreas stops making insulin.
Type II = obese
posted by spork at 11:53 PM on February 19, 2006

A 1 out of 17 chance is around 6%. It doesn't sound terribly high, but then again, I don't know much about type I diabetes.

The red flag is the husband not being interested in researching this. Why not? Is he too freaked out by his recent diagnosis, is he not that into having kids, or does he have a history of ignoring problems hoping they'll go away? Maybe the poster could explain this bit to us in a bit more detail?
posted by hazyjane at 1:06 AM on February 20, 2006

I'm not sure I can agree that a 6% of diabetes is something to freak over in the way SPrintF is freaking. Parents make similar choices all the time. Hell, by the time a woman is 35 th e odds of a birth defect is a couple percent and by the time she is 40 the odds of a baby having a birth defect are approaching that 6% figure.

SPrintF: Would you say that any woman who wants a baby at age 40 is reprehensible and ready to shoulder the responsibility of being a parent? How is that case different?

Parents make this sort of choice all the time.

Refusing to see a genetic counselor, on the other hand, definitely is a cause for concern. There's no reason not to do so.
posted by Justinian at 3:24 AM on February 20, 2006

Also, I hope replies to this post are making a distinction between the types of diabetes.
Type I = pancreas stops making insulin.
Type II = obese

That's a wierd comparison. Type II is insulin resistant i.e. your body makes insulin but can't use it or use it very well. If caught early enough, a sensible diet and oral meds can deal with quite nicely.
posted by Brandon Blatcher at 3:30 AM on February 20, 2006

Is it responsible to have a child when there is a high percentage chance of passing on a genetic disease?

No. Adopt. Your lizard hind-brain tells you to pass on your genes, but you know perfectly well that it's more important to pass on your philosophies and moralities to the next generation, and a kid doesn't need to be related to you for that.
posted by Faint of Butt at 3:34 AM on February 20, 2006

Faint's right, but it's not like diabetes is the horror it used to be by any means.

If it really is a concern, and passing on your own genes isn't as important, i'd look into adoption or something--so very many kids need loving homes and parents.
posted by amberglow at 3:50 AM on February 20, 2006

Listen, it is perfectly acceptable for you to procreate. There are so many unacceptable parents out there that there is no reason, personal qualm or not, that somebody as thoughtful and pleading as yourself should not go ahead and pass on your dna or whatever it is. Evolution is about being able to make the next step, and if the next step is a slight discomfort in knowing that your offspring might have a disadvantage in a non-debilitating area in his/her life, then that is a pretty small step to trip up on, don't you think?

What if they're the person that cures cancer? Wouldn't you feel bad if you knew the person that would've cured cancer was never born because there was a 1/17th possibility that they'd have diabetes?

My advice: if he finds a lost camera, don't track down the owner and tell them you'd like to return their camera, only to reneg at the last minute. Otherwise, you're gravy.
posted by GooseOnTheLoose at 3:58 AM on February 20, 2006

At a minimum, I'd say wait a year or two so that your husband has some idea for himself of what living with Type 1 is like.

On the other hand, he may feel that his life so far has been good enough to justify having been born, and likewise for his relatives who've had Type 1. Have you asked him about what he's been thinking on the subject, as distinct from trying to get him to get tested?

One thing that's messy about figuring out the odds is that a lot of people are working on a cure/preventative for Type 1--it might be discovered by the time your hypothetical kid(s) need it.

Also, aside from responsibility, is having a kid with a substantial risk factor like that something you want to do? I'm not trying to imply that you shouldn't, I'm trying to distinguish between responsibility (to whom?) and your gut feelings.
posted by Nancy Lebovitz at 4:09 AM on February 20, 2006

Maybe you aren't ready to be a parent.

Listen, no child is perfect. Sure, you want a kid who will live the easiest and most satisfactory life but that's not something you can predict. Being a parent means meeting the challenges as they come, whether they are poor grades at school, broken bones, cancer, or diabetes. A 6% chance is nothing, and many people live very successful lives. If you aren't ready to deal with disappointment and setbacks (both yours and the child's) then you're probably not ready to be a mother.

As for your husband's reluctance, I can completely commiserate. You're basically asking him to decide if it would have been better if he'd never been born at all. I assume you love your husband, so ask yourself what life might be like if his parents had made the same choice many people here are urging you to make.
posted by sbutler at 4:52 AM on February 20, 2006

I know a little girl with Type 1 and she's had a pretty terrible time and she doesn't seem to have a life like other kids at all. She's ill a lot, frequently in hospital, and her diet is incredibly restricted. Plus, she gets stuck with needles and stuff everyday. Diabetes might be manageable, but it's still a nasty disease and I know I couldn't do that to a child.
posted by speranza at 4:54 AM on February 20, 2006

Two comments:

First - Type II diabetes does not mean obesity. It simply means you have a reduced function in terms of processing blood sugar. Saying that it's also just obesity implies that you can get rid of it if you weren't fat, which isn't the case either; I lost 55 lbs and I was (and am) still diabetic. Women who are gestationally diabetic also stand a higher chance of developing Type II after their birth and a lot of times, it's not because they're obese by any means. Does it happen a lot more now because of higher rates of obesity? Yes. But it's not an automatic thing at all.

Second - I am also pregnant. My husband is not diabetic although both of his parents are to some degree (his mother had gestational diabetes with his younger sister and about ten or fifteen years later it developed into Type II - not obese; his father is pre-diabetic with Type II and also, is not obese). I asked my doctor about the likelihood of our lousy genes passing on diabetes to the kid and he said it wasn't as likely directly from birth; this will definitely be something we have to watch as we get older.

That being said, if I were in your situation, I probably would not seek genetic counseling if there were a chance my child would have Type I diabetes. Diabetes in and of itself is NOT a death sentence. It's a pain in the ass but as long as you take care of yourself, and teach your child how to do likewise, you will be just fine.

Regardless of the risk factors strictly for Type I diabetes, you two should be seriously discussing what you would do if your child had ANY abnormality, genetic or otherwise. What is the extent you're willing to put yourself through? If either of you are less than happy with that response, then rethinking pregnancy is probably not a bad idea.
posted by cajo at 4:57 AM on February 20, 2006

What cajo said, above. Particularily the last bit.

Exception: I would say that it's only irresponsible if you don't have health insurance. Consistant medical care is the difference between health and illness for diabetics.
posted by desuetude at 6:20 AM on February 20, 2006

(I don't mean that it's necessarily irresponsibile to have a kid unless you have insurance -- just that the OP asked whether it was responsible in the case of increased probability of a disease that is particularly dependant upon consistant medical supervision.)
posted by desuetude at 6:22 AM on February 20, 2006

As other have pointed out, many women routinely get pregnant when they also have similar or greater risks. For example, "the rate of Down syndrome among parents over 40 was 60 per 10,000 births, which is six times higher than the rate found among couples under 35 years old."

While I think that waiting so long to have children is, well, odd (who wants to be getting up several times a night when you're over 40?), everybody's life is different. There is a good chance that you child will not have diabetes, so I think you should feel OK if you decide to go ahead and try to conceive. A 100% chance would be a different story.

You have the benefit of at least knowing what some of your risks are. A lot of couples don't find out about their genetic risk factors until they give birth to a child with a serious genetic illness.
posted by GuyZero at 6:25 AM on February 20, 2006

I would recommend seeing a genetic counselor, as has been mentioned already. It's really the way to go, for the sake of your sanity, and your child.
posted by dead_ at 6:37 AM on February 20, 2006

Would you still have a kid if every male in your family had died of a heart attack before 50? It seems you are trying to address potential and unknown quality of life issues with a moral responsibility to protect your unborn children. This seems reminiscent of Gattica. Let the kid address the issue once he is born! No one is going to be born perfect and even with perfect birth parents there are still risks of Down's, hydrocephalus, GI defects and numerous other maladies. If you keep worrying about a Type I inheritance that by the time the kid actually might develop Type I could be medically solved you will get nowhere.
posted by cdcello at 6:42 AM on February 20, 2006

There's such a thing as being too cautious and/or thoughtful about your future offspring. I have a diabetic nephew and the mere thought that his parents might have decided not to have him if they had known he was likely to have diabetes breaks my heart.
Is your diabetic husband's life not worth living? Was his mother's or his aunt's? Was Keats's life not worth living because it was so short?
Life always ends in death and the details of how you (or your children) get there aren't yours to control. It's the being alive at all that counts.
posted by willpie at 7:03 AM on February 20, 2006

You are asking a crowd of strangers, so I'd guess you're asking about social mores.

The answer is that is completely within common American mores to go ahead and have that child. Americans have children regularly under much worse odds.

That's just stupid. 50 years ago social mores would have dictated they shouldn't have a child if they were of a different race.

--

Anyway, my personal feeling is that you should be able to have a child if you want but you should do everything you can to mitigate the chance that your child will have the disease. That means getting a genetic test for your husband at the very least, and possibly doing something else like trying to select the chromosomes your child will receive (if such a thing is possible today, I really don't know)
posted by delmoi at 8:09 AM on February 20, 2006

As other have pointed out, many women routinely get pregnant when they also have similar or greater risks. For example, "the rate of Down syndrome among parents over 40 was 60 per 10,000 births, which is six times higher than the rate found among couples under 35 years old."

Um, you realize that 60 in 10,000 is less then 600 in 10,000 which is the risk we are talking about here, right ? (1/17 means 6%, or 600 in 10,000)
posted by delmoi at 8:18 AM on February 20, 2006

I wasn't attempting to compare the absolute rates of each. My wording was sloppy - OK, my wording actually indicated the exact opposite of what I meant. I should proofread more.

I was attempting to indicate that it's common for people to do things that are known to be risky, specifically that they delay having children until after they turn 40. If it's OK to wait until after 40 to have children, it's probably OK to conceive when there's a measurable chance of having a child with diabetes. IMO and all.
posted by GuyZero at 8:28 AM on February 20, 2006

Don't rely on metafilter to make this decision. Find one or two reputable sources, preferably non-internet, and read them thoroughly. Take notes, and take your notes to a doctor you trust. Ask questions about living with type I diabetes, advances in treatment, and the progress of diabetes research. It is possible that a cure is being developed. 20 years ago when an uncle of mine was diagnosed with non-Hodgkin's lymphoma, he had a 20% chane of survival. In the years since, that statistic has reversed, and a man with non-Hodgkin's lymphoma has an 80% chance at survival.

My guess is that you came here for a fast answer, but to my mind the last thing you want to do here is make a hasty decision. Do some research, get some advice from your physician and don't hurry yourself into a mistake.
posted by Sara Anne at 8:37 AM on February 20, 2006

delmoi wrote...

You are asking a crowd of strangers, so I'd guess you're asking about social mores.

The answer is that is completely within common American mores to go ahead and have that child. Americans have children regularly under much worse odds.

That's just stupid. 50 years ago social mores would have dictated they shouldn't have a child if they were of a different race.

On behalf of the huge cross section of the American populace that forms the basis for an American Identity I'd like to say: "Nyah, Nyah, Nyah. You can call us stupid all you like, but at the end of the day you're still one guy and we're the huge cross section of the American populace that forms the basis for an American Identity."

Many social mores are stupid, but that doesn't change the immediate social consequences of stepping outside the lines.
posted by tkolar at 9:17 AM on February 20, 2006

Thanks for the thoughtful answers. Clarifications: I posted here to get a general opinion from strangers. My friends and family have wildly different views. I would probably take the chance is it was just 6%; however, it is the unknowably higher percentage when there are multiple cases in the family that scares me. FYI: the base percentage chance of passing on the disease when it's the mother who has type 1 is only 1 in 100.

If our child has any defect or disease, we will love it and cherish it. I'm just not sure I think it's fair to give it those odds to begin with. Because then it's something we knowingly did, v/s being unaware.

I do want to see a genetic counselor, but my husband does not. Of course, the root issue is that he is living with the disease, and he is glad to be here, and doesn't see anything amiss with a child that would have to live with it also. I have two huge reservations: 1) Type 1 is a lifelong medically controlled disease: if you lived in a country without access to advanced medical care, you would die. 2) The way my husband talks about growing up with his mother. Everything in her life is about the disease, and when he talks about growing up with her, he talks about shock and being a little kid and having to be protective and take care of her all the time.
posted by maelanchai at 9:23 AM on February 20, 2006

P.S. Of course, I do not mean to base my final decision on the comments from this thread. Like any online forum, we're all a bunch of random strangers to each other :-). That doesn't make the discussion any less meaningful...
posted by maelanchai at 9:31 AM on February 20, 2006

Let me rephrase the point I made earlier. You already know that the risk is unknowingly high. I don't believe there's a genetic counselor out there that will quote you a reliable number. So what do you hope to gain?
posted by drpynchon at 10:24 AM on February 20, 2006

Maybe your husband has already decided that he's simply going to make sure that *his* kid is raised to feel differently about this disease than he did. That's a natural reaction.

Access to medical care is important, but this isn't like living with AIDS or metastatic cancer. Diabetes is predictable. Insulin was discovered in 1921. Access to insulin, test strips, monitors, etc. is restricted or too expensive in some countries, but these areas are largely either not focused on diabetes because they are swamped with infectious disease, or not focused on diabetes because the incidence is so low. The International Diabetes Federation has a lot of good information, including an atlas.
posted by desuetude at 10:47 AM on February 20, 2006

Would y'all be amenable to using a sperm donor? That would neatly sidestep the problem.
posted by Sxyzzx at 11:55 AM on February 20, 2006

I'm facing this same issue, having an annoying but not-terribly-nasty genetic disorder that has a 50/50 chance of getting passed on to my future kids.

One thing you should do, besides pre-conception genetic counseling, is to line up your resources and your life before the child is born as if you expect the child to have the disorder. For me and my husband, that means we're going to get set up with a good pediatric hematologist, a pediatric practice with a backround in hematology and/or infectious diseases, and scope out internal medicine surgeons for the eventual childhood splenectomy before we decide to commence spawning. Many of these clinics and doctors have waiting lists, so while they might be surprised to see someone come in for a consult before they even have kids, it's a good idea to think of these things ahead of time so you can get your foot in the door and get the best possible care for your kids.

Another thing to think about: get set with the best private health care insurance you can possibly afford now, before you start adding dependents to your coverage. Choose your level of coverage and your preferred level of co-pay with an eye towards the expected yearly bills if your child does get the short end of the genetic stick.

And good luck!
posted by Asparagirl at 12:35 PM on February 20, 2006

Adopt, there are plenty of kids who will end up being discarded if not adopted. You could probably find one with a genetic abnormality if that's what your looking for.
posted by parallax7d at 1:16 PM on February 20, 2006

Don't worry about what other people would think. Worry about what your kid would think. You'll be responsible to him or her, not to all of society.

My parents reinforced each other's negative recessives when they had me and my brother. I am unhappy about this, and -- especially since my mom wanted to be a geneticist -- I really wish they had looked into other options.

Might a biological kid say that to you in fifteen or twenty years? If so, how will you cope with it?
posted by booksandlibretti at 4:03 PM on February 20, 2006

adopt!
posted by The Wig at 7:52 PM on February 20, 2006

My advice: if he finds a lost camera, don't track down the owner and tell them you'd like to return their camera, only to reneg at the last minute. Otherwise, you're gravy.

Hoo lord. This made me laugh out loud. And I concur.
posted by Famous at 9:17 PM on February 20, 2006

I hope you adopt.
posted by leyna howe at 12:47 PM on October 24, 2006