Transmitting genetic disorders to children

[triumphguy]

If you are married then sexual intimacy must be open to life. We can’t pre-judge the quality of that life.

Someone with Huntingdon’s will have many years of life in this world and an eternity in the next.

To deny life in this world is also to deny everlasting life in the next.

As some of you know, and as Meltzerboy indicated, my wife and I have a child with Downs. The geneticists wanted us to prevent further pregnancies, and if we got pregnant wanted us to test for abnormalities. We refused and the specialists were visibly upset with us.

As we said to one “genetic consultant” (would “abortion procurer” be a better term?) whats the point of the test? The test has as high a chance of CAUSING injury or even death to the baby as Down syndrome. Furthermore, even if we found we had a second child with Downs we wouldn’t abort anyway. So we chose to let God be God and chose not to worry about it.

And our next two kids did not have Downs.

If we would have had a second child with Downs would we as parents been guilty of something? I think not.

If our second child would have had Downs we would still have loved him/her just as much and that child’s life/soul would have been just as worthy in the eyes of God.

It was the docs and technicians who thought we had committed a secular sin, even a secular mortal sin. But that is how the culture of death thinks.

 

[martinah]

If you are married then sexual intimacy must be open to life. We can’t pre-judge the quality of that life.

Someone with Huntingdon’s will have many years of life in this world and an eternity in the next.

To deny life in this world is also to deny everlasting life in the next.

As some of you know, and as Meltzerboy indicated, my wife and I have a child with Downs. The geneticists wanted us to prevent further pregnancies, and if we got pregnant wanted us to test for abnormalities. We refused and the specialists were visibly upset with us.

As we said to one “genetic consultant” (would “abortion procurer” be a better term?) whats the point of the test? The test has as high a chance of CAUSING injury or even death to the baby as Down syndrome. Furthermore, even if we found we had a second child with Downs we wouldn’t abort anyway. So we chose to let God be God and chose not to worry about it.

And our next two kids did not have Downs.

If we would have had a second child with Downs would we as parents been guilty of something? I think not.

If our second child would have had Downs we would still have loved him/her just as much and that child’s life/soul would have been just as worthy in the eyes of God.

It was the docs and technicians who thought we had committed a secular sin, even a secular mortal sin. But that is how the culture of death thinks.

Genetic councillors --what a farce. They’re just eugenicists with a kinder sounding name. I am talking from experience. Get tested if it helps you prepare for you soon-to-be-born child if it helps you feel better–it would for me as I think more info is good info. However, don’t let them scare you with statistics and probabilities–those things are not measures for individuals, they are for trends within populations. Nobody can really predict what an individual can do, or will be, or how they find meaningfulness in life. Many people with all the “odds” in their favour waste their talents, abilities and potentials.

 

[Andre1000]

When it is very likely that you children will be very unhealthy, that is a strong indication that someone is not called to marriage.

 

[Bezant]

What is unfair? These statistics for one.

The NFP program that I’m familiar with says that a learning time of 6 to 8 months should precede the beginning of intimacy.

The study that produced the 25% failure rate in the first year ignored this part of the NFP program out of fairness. I read this on an NFP web site, can’t remember where exactly, but given the number of couples I know using NFP 25% can’t be even close to realistic.

Mark Twain - There are lies, damned lies, and then there are statistics.

Wmw,

Which study cited in my link is “unfair”? You may very well know many couples who practice NFP and have never become pregnant, but the studies here are taking into account a much bigger sample of people and probably have a bigger picture of their participants’ intimate lives than you do your friends’.

 

[thewanderer]

Not all contraceptive methods are as effective as others. And considering contraceptive practice outside the lab, the imperfect failure rate is of interest here and shows a very clear difference in effectiveness between NFP and other methods.

(cks.nhs.uk/contraception/background_information/effectiveness_of_contraceptives)

What is important to note about this, though, is that in many studies determining the user effectiveness of NFP people were included who charted and interpreted their charts correctly, knew they were fertile, and yet decided to have sex anyway. This is comparable to a couple deciding to use condoms as their form of birth control and then, in the heat of the moment, go on to have sex without using a condom. It is including in the stats people who are well aware of what they ned to do to avoid pregnancy but then make a decision to go ahead and have sex anyway. It hardly seems fair to discount the method itself based on user failure rates caused by people blatantly disregarding the correct procedure of their form of birth control.

 

[Allegra]

Not all contraceptive methods are as effective as others. And considering contraceptive practice outside the lab, the imperfect failure rate is of interest here and shows a very clear difference in effectiveness between NFP and other methods.

(cks.nhs.uk/contraception/background_information/effectiveness_of_contraceptives)

I believe you, but I don’t necessarily think that your view is realistic or fair.

It may not be “fair” but it is realistic. My sister has gotten pregnant five times on three different kinds of ABC methods. The first time she was on a pill and she miscarried. The doctor told her it was just a “fluke”. Using the same medication, she concieved her second child. Believing that she couldn’t possibly be pregnant, she continued taking the medication several months into the pregnancy and she ended up with a still born baby at eight months. She was put on a different pill and she concieved her oldest daughter. (Fortunately healthy) She tried one of those rings and she got her son. He was born at just over three pounds and barely survived. My sister decided that she would only use condoms and diaphrams after that since she said, “I’d rather give away a live baby then have anymore dead babies.” The condoms actually worked better. It was six years before she got pregnant again. I also have a cousin that carried her daugheter seven months before she realized she was pregnant because she was taking an ABC method that limited her mentrual cycles. Most people know at least one person who concieved while on ABC. It really isn’t that rare.

 

[Julia_Mae]

Allegra;9761040.:

Most people know at least one person who concieved while on ABC. It really isn’t that rare.

I do, also on the pill. I got pregnant using a diaphragm before I was Catholic. The pregnancy rate on ABC is about the same as for NFP. Only with NFP women don’t have the increased risks of cancer and heart disease. And if you do get pregnant, NFP doesn’t kill your child.

 

[Bezant]

It may not be “fair” but it is realistic. My sister has gotten pregnant five times on three different kinds of ABC methods. The first time she was on a pill and she miscarried. The doctor told her it was just a “fluke”. Using the same medication, she concieved her second child. Believing that she couldn’t possibly be pregnant, she continued taking the medication several months into the pregnancy and she ended up with a still born baby at eight months. She was put on a different pill and she concieved her oldest daughter. (Fortunately healthy) She tried one of those rings and she got her son. He was born at just over three pounds and barely survived. My sister decided that she would only use condoms and diaphrams after that since she said, “I’d rather give away a live baby then have anymore dead babies.” The condoms actually worked better. It was six years before she got pregnant again. I also have a cousin that carried her daugheter seven months before she realized she was pregnant because she was taking an ABC method that limited her mentrual cycles. Most people know at least one person who concieved while on ABC. It really isn’t that rare.

Given that all contraceptive methods have limits I’m not surprised – some methods will work better for some people than others. I don’t have a particular problem with NFP but if couples find themselves in the unfortunate situation Meltzerboy brought up, and if they decide to take preventative measures to pregnancy, they should choose the method that works best for them.

 

[skigirl1689]

If you are married then sexual intimacy must be open to life. We can’t pre-judge the quality of that life.

Someone with Huntingdon’s will have many years of life in this world and an eternity in the next.

To deny life in this world is also to deny everlasting life in the next.

As some of you know, and as Meltzerboy indicated, my wife and I have a child with Downs. The geneticists wanted us to prevent further pregnancies, and if we got pregnant wanted us to test for abnormalities. We refused and the specialists were visibly upset with us.

As we said to one “genetic consultant” (would “abortion procurer” be a better term?) whats the point of the test? The test has as high a chance of CAUSING injury or even death to the baby as Down syndrome. Furthermore, even if we found we had a second child with Downs we wouldn’t abort anyway. So we chose to let God be God and chose not to worry about it.

And our next two kids did not have Downs.

If we would have had a second child with Downs would we as parents been guilty of something? I think not.

If our second child would have had Downs we would still have loved him/her just as much and that child’s life/soul would have been just as worthy in the eyes of God.

It was the docs and technicians who thought we had committed a secular sin, even a secular mortal sin. But that is how the culture of death thinks.

This! Yes, there is more of a risk if you know you carry genes that could cause a horrible condition/disease. But every child is a gift from God regardless of their genetic make-up. There could be a chance the child could be perfectly healthy.

I was born with cerebral palsy, due to a blood clot in the umbilical cord possibly caused by an abnormality in the cord itself. Could have been a genetic flaw. My point is, anyone could have a baby with a genetic abnormality, but a person who carries a genetic disorder should seek spiritual guidance before ruling out having children.

 

[Bezant]

What is important to note about this, though, is that in many studies determining the user effectiveness of NFP people were included who charted and interpreted their charts correctly, knew they were fertile, and yet decided to have sex anyway. This is comparable to a couple deciding to use condoms as their form of birth control and then, in the heat of the moment, go on to have sex without using a condom. It is including in the stats people who are well aware of what they ned to do to avoid pregnancy but then make a decision to go ahead and have sex anyway. It hardly seems fair to discount the method itself based on user failure rates caused by people blatantly disregarding the correct procedure of their form of birth control.

You brought up an interesting point, but did any of the studies cited in the NHS chart make this distinction?

I never discounted NFP because its failure rates are higher compared to other methods. It’s actually a very good idea and there’s a common misunderstanding that it’s unreliable. But I don’t think it’s a suitable for everyone.

 

[Agatha813]

It’s not a sin, but not advisable to have sexual relations unless you want to pass that disorder to your children.

 

[LJN21]

I don’t have a particular problem with NFP but if couples find themselves in the unfortunate situation Meltzerboy brought up, and if they decide to take preventative measures to pregnancy, they should choose the method that works best for them.

Wouldn’t it require an unplanned pregnancies to figure out which methods do not work for you?

Then I’d like to say again, the ONLY way be 100% sure its not possible to conceive is to not have sex.

 

[Bezant]

Wouldn’t it require an unplanned pregnancies to figure out which methods do not work for you?

Why? If you have a little background information, like family history, your religious views, menstrual cycles, and health issues, you can make an educated and effective decision.

Then I’d like to say again, the ONLY way be 100% sure its not possible to conceive is to not have sex.

That every method has a risk of pregnancy is not enough, in my opinion, to suggest the only option is to abstain.

 

[LJN21]

Why? If you have a little background information, like family history, your religious views, menstrual cycles, and health issues, you can make an educated and effective decision.

Every woman’s cycle is different, my fertility is nothing like my mothers. Family history is not really going to help you there. Having an artificially exact 28 day cycle or no cycle at all because of artificial hormones does tell you what you menstrual cycles are. Health issues are more likely to limit the number of contraceptives you can use because of the laundry list of serious side effects they have themselves.

The only way you are going to have the information necessary to make an informed decision is to be aware of your own fertility. To be able to do that you can’t be on artificial hormones and you have to chart, if you don’t want to get pregnant while your doing that your going to have to abstain.

That every method has a risk of pregnancy is not enough, in my opinion, to suggest the only option is to abstain.

Why not? If you life depended on not getting pregnant, would you really want to play Russian Roulette with a birth control method?

 

[meltzerboy]

Yes, it is morally permissible. I suppose the argument could even be made that choosing not to have children for fear of illness is immoral. If we choose to not have children for fear of devastating diseases such as Huntington’s, that could lead us down a slippery slope. If Huntington’s is a reason to not have children, what if deafness, or Turret’s syndrome, or Albinism runs in your family? This is a valid concern, but it comes dangerously close to the beginnings of eugenics.

I was also thinking about the flip side of the question according to Church teaching. Would it be immoral NOT to have children for fear of transmitting a deadly genetic disease?

 

[1ke]

I was also thinking about the flip side of the question according to Church teaching. Would it be immoral NOT to have children for fear of transmitting a deadly genetic disease?

It’s a prudential matter.

 

[vera_dicere]

I’m not saying that and realize you are personally involved. Having a child is always a joy. And I’m not talking about abortion either. I was just considering whether there are possible moral implications of knowing one might have a high likelihood of passing on a (fatal) disorder to one’s child.

There’s always a risk with conception and pregnancy. Should we say no woman over 35 should get pregnant because of the risk of Downs Syndrome? Should we say no fathering of children over 40 as there’s a growing body of evidence that suggests it increases risk of autism?

How about we extend that, how about we ask if it is morally permissable to have a gas heater in a home with children? There are risks with gas heaters, it could explode, teh child could get too close and catch fire. It could fall on a baby and crush them.

There’s no guarentee that yay or nay you’ll pass a genetic disorder to a child. Even things like Tay Sachs [spelling?] aren’t 100% sure of passage.

If a person is truly concerned, then they should avoid marriage and children altogether, as others have said.

 

[thewanderer]

You brought up an interesting point, but did any of the studies cited in the NHS chart make this distinction?

I never discounted NFP because its failure rates are higher compared to other methods. It’s actually a very good idea and there’s a common misunderstanding that it’s unreliable. But I don’t think it’s a suitable for everyone.

Seeing as they define “user failure” as

User failure: pregnancy occurs because the method is not used, or is used incorrectly.

it seems pretty clear that they did not make this important distinction.

Here is where I am getting my info, in case you are curious.

From Taking Charge of Your Fertility, a very well received book now available in its 10th anniversary addition, written by a nationally respected, secular, ABC approving, Women’s Health educator and speaker, Toni Weschler:

With such wide discrepency in data, is it posssible to use the rules with the confidence you need? In fact, yes, very much so, but first you need to know where the data arise and why the discrepency in reported rates is really not such a mystery.
…
As mentioned, various studies show that in the real world, NFP user failure rates vary greatly. Still, 10 to 12% per year seems close to the average reported in the medical literature for the sympto-thermal rules taught in Chapter 9. But what is equally important is that all these studies clearly suggest that in a large percentage of pregnancies that occur while “using” NFP, the cause of contraception was due to intentional violation of the method rules.

Emphasis is authors.

It seems pretty clear that the accepted average user failure rate is much lower than that claimed by this one survey, and that even with the lower accepted user failure rate much of it is on account of people’s intentional decisions to not follow the method. Since this book is from someone who has nothing against contraception as such, even suggesting using the barrier method during fertile periods, its pretty clear she’s not just twisting or ignoring data from some anti-ABC bias. Also, if this claim she is making about the effectiveness of this method were false, I think someone would have pointed it out to her and forced her to fix it after 10 years of publication.

OP: I know that I am off-topic and I apologize for that, its just that ever since I’ve actually done some research into NFP I’ve gotten super frustrated by all the misinformation out there, particularly the misconception people have that it is not actually effective. I don’t really have anything to add to the responses you have already received. I agree that this is most likely a matter that is up to you to make a prudent decision, based on your future ability to care for your children etc, but that it is not something with a strict moral boundary of “do or don’t”. But I admit that I do not know whether there is an official teaching on this, so this is simply my own opinion and gut feeling.

 

[meltzerboy]

If you are asking what Church teaching on the matter is, the answer is yes it is morally permissible.

Children are always a great good, whether or not they may be born with a disease. One is under no obligation to avoid children, such a mentality would imply that being born with a disease is a moral evil. It is not.

God loves us all and wants many, many souls in heaven with him where we will all be perfect.

Now prudentially, a couple may need to consider their resources to care for a child in such circumstances when making a decision on when and how many children to have. One already born with a serious condition may strain resources and preclude having more children. In which case, a couple would be able to use natural family planning.

But no, the possibility that offspring might receive a gene that causes or carries a disorder is not a reason in and of itself to avoid children.

Yes, I was interested in the Church’s teaching about the issue. The notion of prudential judgment seems a fitting one. Thanks for your response.

 

[meltzerboy]

My understanding concerning Huntington’s disease is that if you know you carry the gene, you also know that if you live long enough, you will eventually suffer from the disease yourself, and the disease will progressively incapacitate you. I hope you do not actually know that you carry such a gene. If so, you have my sympathy.

Again, according to my understanding, as the disease is passed along in families, symptoms tend to develop at younger and younger ages, because the genetic issue is compounded as it is passed along. This adds another element to this decision: that is, that you know your ability to parent will be compromised at some time. Even though you don’t know that it will be compromised while you child is still at home, you do know that you will not be in a position to personally give your child the care that the condition would require.

If it is morally permissible to have children even though you know they will be born into original sin and will leave the world through some sort of a death, with all sorts of trials and temptations in between, I don’t know what could be worse than that. Children are a blessing and a delight to God–each one of us is!–even with all of that to deal with. Next to that, in the big picture physical trials are a much smaller thing. Having said that, knowing that you are afflicted with Huntington’s means that you will be afflicted at some point and that your spouse might well have to expend serious resources to see to your care. It is reasonable to anticipate that your capacity as a couple to parent is going to be severely compromised at that point. That is definitely a well-grounded reason to avoid conception.

It is certainly morally permissible to get genetic testing as a way of determining whether or not you can expect to have limits placed on your own future ability to parent. It is not a moral necessity that you get such testing, however. OTOH, my understanding is that if you do not have the disease yourself, you cannot pass it on, because it is not a condition that is passed on via recessive genes. You can pass it on while you are early in life and still symptom-free, but you won’t pass it on while only being heterozygous yourself.

No, I don’t carry the gene for Huntington’s AFAIK, but thanks for your concern as well as the information.