Heavy personal ethics question

[eyepaddle]

Okay folks, this is sort of a "what would you do" scenario. Today I had confirmation of a youthful diagnosis of X-linked retinoschisis, this is a fairly uncommon genetic condition in which the two layers of the retina are separated (not torn though); it affects between 1 in 5000 to 1 in 25000 men. The average visual acuity is 20/70, sometimes it goes all the way to legally blind (or worse).

Alright, there's the setup, now for the conundrum, this is a disease linked to the X chromosome, the upshot is no child of mine could develop the disease; if I have only sons they can NOT be carriers and the disease is gone, however, if I have daughters they would have a 50/50 chance of being carriers. That is to say that any sons THEY might have would have a 50/50 shot of having this disease--which might cause blindness.

So now I know. What do I do with this information? Take my chances and hope for the best? Not have any children, and thus let the defect definitely drop out of the gene pool? (Please note, if I were an expectant father, I would not want to learn the sex of the baby until birth--so there are no ghastly "baby shopping" issues to contend with)

On the plus side, I am single and have no children, so this is sort of an academic endeavour.

Any thoughts y'all would care to offer are welcome.

[Catch22Dem]

1. Have children

Unless you're looking for an out. Besides advances in medical science are unpredictable. Your children (daughters) may never have anything to worry about.

[cags]

2. There are programs that increase your chance of having one sex over

another. Or you could always adopt if you don't feel that is ethical. It really is a personal decision. For trying to root out a genetic disease I have no problems with trying to increase your odds of a certain sex.

[eyepaddle]

5. Thank you

this is a reply to both 1 and 2, I am not looking for an out--I just wonder how fare it would be to subject a daughter to a decision I could've made.

I wold certainly consider adoption.

[Turbineguy]

3. Supposedly

there is a connection between the gender of the child and the time of conception in the ovarian cycle. I.E., late conception in the fertile period tends to give boys.

This is because the boy sperm swim faster and the ovum skin is thinner therefore a boy sperm gets through.

OK, all you life science people, have at it. I am a machinery person.

[LeftyMom]

46. This is true

Girls tend to be concieved earlier in the cycle and boys closer to ovulation. Also, vaginal pH effects sperm survival, so vinegar or baking soda douches and avoiding or achieving orgasm in the female can also effect the probability of concieving a boy or a girl, as can depth of penetration (shallow penetration at time of orgasm favors female sperm.) The best book on this is How to Choose the sex of Your Baby by Dr Shettles, but Taking Charge of Your Fertility by Toni Weschler also describes the method fairly well and is of gret use in understanding a woman's cycle and avoiding or achieving pregnancy.

If I had a sex-linked trait that wasn't serious enough to merit adoption or egg donation to keep my flawed genes out of my child, I'd either use the Shettles method or Micro-sort (which involves spinning sperm so that they sort by weight, then doing an insem,) depending on the seriousness. Micro-sort is more effective, but pricey and much more clinical.

[ultraist]

4. I wouldn't let that stop me from having children

It's not a life threatening condition or one that causes great pain. My child is near sighted and likely inherited it from my husband, it's a minor inconvenience in her life.

I would however inform the mother of your child prior to having children. It's a mutual decision although I see this genetic defect as minor. Many people with far worse conditions live quality lives.

Besides, they may very well have developed a surgery to restore eyesight for this condition by the time your grandchildren are born.

[AP]

6. There's a procedure that allows you to pick the gender of your child.

By the way.

[eyepaddle]

7. Does anybody know how effective that is?

I suppose I could do research--hell I guess I probably will.

And damn, I've never been one of those "I've just got to have a son" kind of guys. Mind you, I've got no problems with boys, just that little girls are awfully cute too! ;)

edited for clarity

[cags]

8. just do a google search on "sex selection" and you'll find a ton of stuff

For a 100% gauranteed sex I think its about $10,000 grand. Then it goes down for a 80% chance.

[eyepaddle]

11. Well, on an upbeat note:

for that price you can damn well rest assured that that will be one PLANNED prgenancy!

Once again thanks folks :hi:

[eyepaddle]

17. Wow,

I did that google search and, boy howdy, you weren't kidding!

Well, it's good to know that there are options. I just want people to know that this wouldn't be some male vanity baby shopping bit. I don't give a rat's fanny about "carrying on the family name."

Just want any offs[ring to be healthy and happy--and if I could be allowed one touch of "living through your children vanity"--curious.

[AP]

9. Apparently it's very high.

They put your sperm in a centrifuge and separate the x from the y.

It was developed by bull breeders.

[msanthrope]

41. Well, that puts a spin on it......n/t

[ultraist]

10. Do you really think...

That this condition will adversely affect quality of life? Most people are not even aware of genetic defects when they have children, unless it's a life threatening disease. No child is perfect.

But everyone has to do what they feel comfortable with. I have friends with special needs children and these kids are living wonderful lives. The parents love them as much as they love their "normal" kids.

It sounds a bit eugenics to me to expect to have a genetically perfect child.

But, adoption is a good option no matter what the situation, esp considering over population issues. We have one biological and one adopted child.

[eyepaddle]

12. Well speaking from personal experience

having severely limited sight is a bummer. Driving is a complete pain in the ass--plus the stress of having to go in every few years and get evaluated by a doctor to prove I AM fit to drive. Add to that there are a lot of careers that I am otherwise suited for which I am medically incapable of doing.

Getting through school is a complete bitch--so few teachers/professors really understand that just because you don't look "blind" doesn't mean you don't have special needs. This made shit like chemistry really tough--trying to decipher all those equations and taking notes by sound alone.

Having said that, yes I enjoy my life tremendously and have few regrets. But the issue is that I KNOW this is a distinct chance for a seriously difficult life. Many people chose not to have children, well, simply because they don't want them.

I don't hink I'm being terribly clear in this post, please forgive me, I'm just trying to mull this over-with a little help from all of you.

[sendero]

13. You know...

... people live happy productive lives with a lot worse health problems than that.

Medical science is making incredible strides, I'd not be too sure a treatment won't be found in time.

If I were you, this would not be much of a factor in my decision. There are lots of more pressing things to consider before bringing children into the world - if you want to be a father you should do so.

[eyepaddle]

14. They're not even looking for a treatment,

the condition is just too rare. Like I say, it's not so much about me, it's the fact that I might potentially putting a daughter of mine in this position. There is ZERO chance that any of my kids would have this--they just might be carriers. I'm just concerned about passing the buck.

[sendero]

15. Let me ask you.....

.... do you think that, should you have to tell a daughter 20 years from now that she might carry this gene, that she would wish she'd never been born?

Because that seems like your question.

(I'm not trying to be rough here, I'm not sure I get your question)

[eyepaddle]

19. No, it's not that;

hell I'M the one with a borderline-severe visual impairment, and I'm happy I was born--but my parents had no way of knowing this was in the offing. I now irrefutably do know. Is it fair for me to put soebody else in the position where they have to make this decision?

In my mind deciding not to have children isn't catastrophic--but it is nonetheless VERY serious, and I think I want to be prepared.

But (as other posters have mentioned) there are methods of determing gender. If I have sons--this is moot, they can go on their merry way with nary a thought about this.

[sendero]

22. Yes...

... but that opens a worse dilemma. Would you abort daughters just for this reason? That sounds like a much worse ethical dilemma to me.

Personally, again - the choice for a daughter of yours is to deal with the possibility that she is a carrier or wish she didn't exist.

I don't see it as a realistic question.

[eyepaddle]

24. In my post where I talk about no ghastly

"baby shopping" questions to ponder I meant that I WILL NOT WANT ANY OF MY CHILDREN TO BE ABORTED FOR ANYTHING THAT IS NOT LIFE THREATENING TO THE MOTHER OR BABY.

I just didn't feel like pissing anybody off with an abortion discussion.

Here's how it's a realistic question. It's you--not me, that is in this position YOU get to make the call. YOU have a blind grandson, and YOU get to tell him "you know I kinda had a feeling this might happen, life's not fair."

[sendero]

25. I think we just see life ...

... in a fundamentally different way.

I have plenty of "attributes" I inherited from my parents that, given a choice, I would jettison.

Now it's true that none are as debilitating as blindness. But somehow, I still can't believe that ANYONE would think to themselves "well, I'm gonna go blind so I just wish I were never born".

I honestly think if it were me, I would not base my decision to have children on this issue. So that is my answer.

[eyepaddle]

27. I can respect that.

Thank you for your thoughts on this issue. I'm not even in any immediate danger of having to make this call. It's just that when the time comes I don't want to do anything rash. I tend to be sort of contemplative in how I live my, and with an issue as momentous as this, that just gets ratcheted up a notch.

Sorry for being a little loud in my last reponse--I just wanted to let you know the precise scope of my thinking.:hug:

[Ms. Toad]

33. Your choice

Is whether to have a child that has no chance of having this particular condition. That seems to me to be a relatively easy choice.

Make your choices based on the potential outcome in the generation you will be creating - considering all of the options (choosing not to create potential carriers is certainly a valid option, particularly considering that there are countless older children and black male infants looking for families). There are lots of life option limitations on our children, linked to a variety of factors - place of birth dictates citizenship, for example, and creates or limits a whole host of life options for our children. Would you choose not to have children if you lived in Mexico because s/he might have fewer life options as a non-US citizen? In your case the life options limitations that may be inherent for any biological daughter of yours is medically linked rather than geographically linked.

Allow your daughters to make their own decisions about whether they should have children, knowing that chances are 50-50 that they will have this condition. Their choice may be quite difficult - or they may have no desire to have children at all in which case their choice will be easy. At any rate, it will be their choice and you needn't agonize over what may, in reality, not be a concern at all for them.

You didn't ask - but I do believe any daughter you have does have the right to know they may be carriers so they can be tested and make informed decisions about whether to have children.

[eyepaddle]

35. That's an angle I hadn't considered,

That's why I threw this one out there. It's a lot to think about, and I wanted help.

Yeah, if I were to have daughters there's no doubt that I would tell them as much ad I know about this stuff.

[dweller]

20. if you find any solace in any post here

i hope sendero's 1st above does it. Mine would be be fruitful, multiply, prosper, and hope for the best.

Since you have to consider 50/50 of a male/female child of your own, and then 50/50 of them having the chance of passing it on, and then 50/50 of them having a son....

many folks deal with worse odds. Perhaps you are the lucky one.

and with that in mind, my advice is in the first line.

dad of 2 daughters,
dp

ps. i just posed this question to them both, and they said you should have kids if you want. . .

[TroubleMan]

16. Have kids - one day this gene might cure something instead of hurt

You never know.

[bling bling]

18. Ethically it isn't wrong at all to have children regardless of this gene.

Personally, my opinion is that I think you SHOULD have children if and when you want to. I think you'd be a wonderful parent considering how thoughtful you already are regarding your future children and grandchildren. I hope you don't overlook how many other wonderful aspects you have that are also part of the "gene pool."

I know someone else who has a similar condition (I'm probably wrong but I thought it was something like retinitis pigmentosis or something). He's lost the majority of his vision but he's learning to adjust and enjoys life despite not being able to see. He would never say that he wished he wasn't born because of it. I've grown out of touch with him now since I stopped working for him but my life would be completely different had he never been born.

[eyepaddle]

21. Thanks, I needed that

Seriously, thank you, I feel flattered.

Yeah, my condition is somewhat similar to RP--although thankfully it doesn't progress much. Your vision sucks, but it doesn't degrade any faster than average. In othre words, you have what you have.

:hug:

[Danmel]

23. There are NO guarantees in life

You can have no family history of problems and have a mutation, or something can happen. I'd speak to a genetic counsellor before you and your spouse decide what to do and make the best decision you can. Don't agonize- just live your life the best way you can.

[double_helix]

38. But it would be morally wrong to treat this lightly

by taking the "just do it", utopian attitude of some who have posted on this thread. You are doing the rational, morally correct thing by doing the research, by asking these questions.

IMO, information changes the game. Now that we understand genetics, we have the responsibility to make better choices. Not doing so would be just as immoral as the religious fundamentalists who allow their children to die from a mild illness when they know that modern medicine can provide a simple cure.

IMO, it is your responsibility - with the knowledge you have - to try your best to ensure that your child will be normal: in your case, this means using whatever methods available to have a boy. And then inform your child so he knows what his odds are when he wants to have a child.

Many people will say that genetic engineering is evil because it encourages "designer babies"; I believe that it is far more evil to not use any tool readily available that can prevent human suffering - especially the suffering of our own children. And being born abnormal (and there is such a thing as normal and abnormal) does cause suffering in the real world, regardless of what some idealists say to the contrary.

[bling bling]

45. I respectfully disagree.

First, nature is as it should be. We have different genes for a very critical reason. What appears to you to be a genetic defect is actually very natural and normal and good. We have different strenghts, different chemistry, different genes, differences in general because without these differences we as a species are vulnerable to extinction.

Second, I don't think of this particular situation as being one in which any child is subject to suffering. Would the OP had been about a gene that had the potential to cause suffering to someone I would agree with you more about looking into genetic engineering. But that was not the case at all, not even close. The child in this sitation will be normal, even if the gene is passed along and becomes dominant. He or she may eventually have impaired vision, but that's hardly a reason to call someone abnormal or automatically assume they are destined to a life of suffering.

I gave an example earlier of someone who I personally know who was born with a gene that has progressively caused him to lose his sight. Had his parents been advised to do the "responsible" thing and not have him or use science to change him I would not be who I am today, and neither would the 130 other people who worked for him. It's not utopian to consider him normal. Actually, he would probably be insulted and offended by anyone who assumes he's suffering and abnormal.

[faithfulcitizen]

26. I'm sorry to hear about your condition, I hope it doesn't worsen...

but as to your question...My family also has a genetic disease that affects only men and not women, although women are carriers. But, you can't control everything in life (ususally anything) so, you just have to roll the dice and take a chance. Plus, if/when you do marry and think about having children, your spouse will probably have thoughts on it as well. So, who knows, right?

best wishes, fc

[eyepaddle]

29. Thank you.

It's been pretty stable for more than thirty years. As long as I don't have a retinal detachement (tear) I should hang on to my 20/60-20/80 vision.

(Oh yeah, retinal detachement is something that all older adults are at risk of--though I suppose I am marginaly more so. They can do laser surgery to repair tears in pretty much everybody--even me)

I suppose I'll make a Public Service Announcement--of any of you see flashing lights, or see "floaters" in your vision--get to an opthalmologist ASAP.

[davekriss]

44. Umm, I just posted lower down the thread...

But I have indeed seen specks of flashing light and I have fairly extensive floaters in my vision. The floaters occurred suddenly when I was a teenager (I'm in my 40's now) after taking mega-doses of a street hallucinogenic (hey, it was the seventies!). But the flashing specks of light are new, and my vision has markedly deteriorated over the last year or two. ...yes, I'll go to an opthalmologist very soon!

[JVS]

28. Wouldn't your daugters have a 100% chance of being carriers?

Whose male offspring would have a 50% chance of being affected (assuming her husband is normal)

Se if there is way to make sure you have sons, so that it can't be passed down

[eyepaddle]

30. I'm not sure of the chance of a daughter being a carrier

It's at least 50/50 maybe 100 percent. And it seems that there are procedures to separate X and Y carrying sperm cells. They ain't cheap but they do work!

[JVS]

31. I think it is 100%

You have X(corrupt) and Y, your wife has X and X.
You have a daughter, you have contributed your corrupt X, your wife has contributed one of her two X's .
The daughter has X(corrupt) and X. She is a carrier.
Your daughter gets married to a presumably normal man
They have a daughter: 50% chance XX, 50% chance X(corrupt)X carrier
They have a son: 50% chance X(corrupt)Y disease sufferer, 50% chance XY normal non-carrier

[eyepaddle]

32. Oooh, nice work!

Did you hit a punnet (sp?) square ? I believe you're right. I did okay in biology--but I never really took much. Plus it's been a couple of years. That looks about right to me.

Thanks,

edited for clarity

[deadparrot]

34. If you want to have kids, have kids.

As people have said earlier, people live perfectly fulfilled lives with worse defects than this. And there's always new research and procedures coming out...who knows what will be out there in a few years.

It's amazing what the medical community can do nowadays. Don't let a medical condition that isn't life-threatening get in the way of what you really want.

If you want kids, go for it. :)

[eyepaddle]

36. Thank you everybody for your input!

I feel better now, just turning this over in my head. As of now there's no deadline to make this sort of decision, it's just that a HIGH potential for blindness isn't a trivial consideration--so I did not want to consider it in a trivial fashion!

Have a good night (I've got hit the ol' sack!)
and thank you all again for offering your thoughts.

:grouphug:

[eyepaddle]

37. Good Night Folks!

(in case you missed the other post) I'm hittin' it for the night. I do appreciate your thoughts.

Thanks

[illini]

39. Im sorry I dont understand the question???

Unless without any doubt your child would be born with massive insurmountable problems there is no reason not to have children. Genetics cant be guided. Or shouldnt be in my oppinion.

et

[alarimer]

40. tough decision

One the one hand, eyesight (or lack thereof) is mostly a quality of life issue. Blind people often lead full lives. Obviously they have limitations. This is a different case than, say, Huntington's which is invariably fatal to those who have it. Plus you never know what kind of medical advances will be made in the coming decades.

[davekriss]

42. I adopted two daughters...

Siblings. One, 13, is dx rapid-cycling, early-onset bipolar disorder (bp) type I/ADHD. The other, 11, is autistic. After making inquiries we discovered the birth father's family has bp, adhd, affective schizoid disorder, and other assorted maladies almost to a person and up and down the generations. Obviously something genetic going on there.

My bp daughter knows she's adopted (I got her when she was 3) but she is not aware of the extent of illness in her genetic heritage. However, she does understand the full burden of her disease (she's been hospitalized over 20 months since 2001) and has heard that the predisposition for it can be inherited. At its worst, the disease and its toll can be very bad. Suicide is a very real risk.

She asked me the other day, "Dad, should I have children? Maybe I should adopt? Like you?"

My answer (not exactly verbatim): "There'll be nothing more precious than that moment when your newborn baby rests on your chest and opens its eyes to see you, its mom, and just then the glory of the universe rushes forward to greet you in exhuberant joy. All is good in the world!, the baby will think, then that little mouth lets out a big yawn and rests."

"You were that baby once, and you yawned sated and happy. Is it worth it? Only you can answer. But I am overwhelmingly glad that your birth parents made the decision they did. Because here you are. And like that mom I feel joy and gratitude and happiness. Everyday. To me, it is worth it. But only you can decide for yourself."

Her answer: A big smile, glad eyes, and an "O dad!".

So, eyepaddle, you are faced with the same question. And I am assuming the odds are that your offspring won't be beyond "legally blind" (do the near blind, or the 20/70, still have joy in their lives?). But only you can decide for yourself.

(An aside, my autistic daughter is doing very well, talks up a storm now even if oddly modulated and about odd things. But so happy, so jubilant, so often! And a wonderful, angelic voice when she sings! A genuine gift to the rest of us!!)

[SuffragetteSal]

43. It is entirely your choice...

Is it really any different than passing on poor eyesight. I inherited myopic vision corrected with glasses and my eyesight uncorrected is 20/400. How is your eyesight now? Will it get worse so that you may be compromised with your quality of life or employment stability? Will your own health be compromised to the extent that caring for a child would be hard?

You are a very kind and intelligent person to want to make a calculated decision on this important question. Good luck.

[muriel_volestrangler]

47. One more thing to consider

If you have any daughters, by the time they come to having children, it might be possible to screen their ova for which carry the gene allowing the disease, and which carry one preventing it.