JL said:

"It seems to me that this whole conundrum of his son's possible future reproduction could just be avoided by having his son neutered, without his knowledge......."

Gotta love ya JL, too funnny.

Fred, just giving you a hard time today, and absolutely no harm intended, k? In reality i know you've had a lot of hard choices to make, and i'm glad it wasn't me having to make those choices.

JL,

That's an option, isn't it? There is always Mexico... We could go on a trip together couldn't we?

It's a serious ethical problem. The only issue that's different with HD is that there is NO cure at this time. So what does knowing you have HD do for you?

But to all, knowing you have HD has caused major life changes in you. One of them is exercise and all the supplements. Fear of death causes you to make these life changes.

You can take some meansures of prevention if you know you have it. And what better time to start than in childhood?

And isn't it my responsiblity to do all I can for my child? To make sure he is prepared for the hard road ahead?

Why wouldn't I want to have him tested? Have you all ever asked the layman what they would do? See the responses, be amazed.

One person, who didn't know I was speaking of my own personal experince said "those people shouldn't be allowed to reproduce".

It was mandatory to sterilize people with HD in Canada in 1928
[en.wikipedia.org]

It was also mandatory in many countries, and likely still is in some:
[www.huntingtons.info]

The idea of testing children for adult onset diseases is still up in the air:
[muse.jhu.edu]

It's still a gray area in many respects, and the attitudes are changing about who and when should be genetically screened.

[www.georgetown.edu]

Don't be surprised if the morality of this shifts from the individual to the society. It's happened before. we think we are safeguarded from this type of activity, but it is always near the surface.

Parents sue doctors for overlooked genetic disorders in babies:
[www.law.com]
[www.mhhe.com]

I stand by my decision. I haven't seen a reasonable rebuttal so far. Only emotional ones.

The solution I came up with is within the law, it's within the scope of ethics. The test could have indicated JHD, and with the results at 50. My son's was 49. Not a big difference huh?

[huntingtondisease.tripod.com] (reference to CAG and JHD)

I didn't recognize my wife's symptoms like I see some here on the forum have. I see some people devistated about symptoms that I ignored for years. Both my wife and I ignored it and people told me it was my "imaginiation" when she was already in stage 2 of the disease. I only acknowledged she may have a problem when she stabbed herself in the face with a fork while eating. She had already been through a string of accidents and her behavior was getting very bi-polar at that point. I just thought she was getting unreasonable and stubborn.

We didn't want to know and that prevented a few more good years I could have spent with her. She would have done somenthing like work out and take supplements IF SHE WAS SURE. Denial and ignorance of this disease cost me years of family life. It is painful to test. We all know that.

Is it wrong for me to do the sweating and not him? Is it wrong for me to know the full extent of my son's health problems? Is it wrong for me to try and do something to help? Is it wrong for me to be the one to tell him? Is it wrong for me to try and prevent another case of HD? Is it wrong for me to prepare for the future I know will happen now? Is it wrong for me to find out he's OK and he could just skip along?

If he came up negative he would have never ever had to suffer one minute of worry. No fear of testing, depression, and false symptoms. I would have told him immediately. That was my hope, but unfortunately that didn't happen did it?

So the "ethics" and "morality" of these issues are evolving. It's open to debate. Look up "wrongful birth". [www.discovery.org]

We can agree to disagree is all I have to say about it.

in general, secrecy tears families apart far worse than facing the disease whatever it is. Shame is far more damaging than embarrassment.
In alcoholic families like mine, secrecy was a way of life. I never even knew that there was an even bigger secret of HD until I was 50 years old and doing my hobby of genealogy.

I would want to know. if I was 15 I would feel obstructed if I didn't know, I always knew there was something wrong with my brain but I didn't know what. I was high IQ but I could never easily organize and prioritize, so I became a clown.
I know myself well enough that if I had a minor I would at least seriously consider doing what you did Fred.

Here is another aspect: supposing my 25 year old girl wants kids. Should she be required to test before becoming pregnant?




Edited 2 time(s). Last edit at 09/14/2006 10:00AM by appleseed.

I'm not sure it is good for HD to be neutered, but if it were the cure, we'd all be sterile.

Is it wrong for me to do the sweating and not him? Is it wrong for me to know the full extent of my son's health problems? Is it wrong for me to try and do something to help? Is it wrong for me to be the one to tell him? Is it wrong for me to try and prevent another case of HD? Is it wrong for me to prepare for the future I know will happen now? Is it wrong for me to find out he's OK and he could just skip along?

My argument is not on whether you made the wrong choice personally. I don't want to do that anyway...it's done and I hope it's for the best. It may well be.

Here is why I think as a rule it is a bad thing, for this disease in particular. You may call this emotional if you want to. I have no problem with that. Like it or not many things in life are based on emotions. People burn a flag from emotion...people want an amendment based on emotion.

For this to be the right thing, open for anyone to do, you have to consider who everyone is. In this case that includes parents who are HD pos. themselves and maybe symptomatic. Parenting skills and discretion are not always the hallmark of HD. There are waaaay to many stories of poor if not abusive HD parents. I know for a fact...a genuine fact....that had my wife had known my kids were HD pos. her life, my life, and most certainly the lives of my kids would have been miserable over years of obsession over that fact.

Not every child is living in the shrouded protection you provide your son. Most live their lives dealing with this everyday and under very trying circumstances as is. Yes some parents can keep the news to themselves...and guard their children properly. In real world HD that is often not how it is. People commit suicide over news like this when they themselves decide to test and get the news under properly controlled circumstances. Think about what some teen might do with an obsessed HD parent constantly repeating impending doom to them will do. You can't just give this "right" to non HD parents. They have full rights in all phases of their lives...including parenting and their child's health concerns. Would Lisa have been the guardian of this secret like you have been? If the similarities between between our wives is what they seem to be...I doubt it. This is why I don't want this viewpoint advocated. I can't give you ten links to the web...I wish I could to my imagination though. I wonder how many HD pos. people and those at risk right now would have wanted their HD parent to have this knowledge while they were growing up. This is something much bigger than handing out fish oil. It's bigger than setting up a trust fund for the future. On a grand scale...across the board...with this population of parents...I see testing kids as a very very very poor idea. I am personally relieved that Teresa had no such right or if she had the marginal right, doctors would have exercised their ethical code. The misery that would have ensued is beyond what I even want to imagine...possibly the suicide of my own wife, or kids, or both. There is some emotion for ya.

Eric,

My wife suffered for years not knowing her status. She would stay up and cry and bemoan if she had it or not.

We suffered through the wait for the test results like everybody else does that is forced to do this.

When our son was concieved we sat and though very seriously of terminating the pregancy due to the risk. It was a real concern for us.

But she wasn't showing any symptoms.

If we had know for sure her status, we would not have had a child.

Would my wife have done this? I dunno, maybe. She thought about it when she was tested. She mentioned it, but she was afraid of a positive outcome too. Would she have guarded the secret if the roles were reversed and I was HD and she wasn't? Maybe. But that's all la la land anyway. We will never know.

My son is 12. His opinion is mute. If he doesn't want to go to school am I supposed to honor that? If he is sick and doesn't want to take that bad tasting medicine am I supposed to just back off?

You are speculating about your kid's lives, etc. You would be miserable.

I can say that I was miserable and wondering all the time if he had it or not. Now I'm not. I'm calm. I know for sure. I have come to accept that fact. I have a problem and I have a plan.

Your wife had that right, and you do too.

As far as suicide, well, that's another issue altogether isn't it?

There's enough misery in this for all of us. You and I have a unique perspective Eric. We don't just get to watch our wives die, we get to watch our children die, and if we live long enough, we get to watch grandchildren die. (Ask Diane about that)

I don't want to get to the grandchildren.

Suicide and HD are far from separate issues...and I am not asking if she would have guarded it as negative..I am asking if she would have guarded it as positive? As symptomatic? A recommendation like this across the board, gives Teresa, Lisa, and all HD parents like them the knowledge to do with as they feel best. Unfortunately what an HD parent feels is best is sometimes worst. I am more than willing to sacrifice my "right" to this test to make sure some kids don't get put through what would be a nightmare. There is no leap in that thinking. Maybe you didn't get the interaction between Lisa and your son that I got between Teresa and my boys. I am not holding that against you. But knowing even a bad hair cut on the boys could be talked about for months even after it has grow out...her having something like a pos son on her mind would have been horrible. There are certain things you can speculate with nearly complete accuracy. This is certainly worth the speculation. I am sure that would have been hellish on all of us.

You watching the same research I am? You have people 50 years for now still kicking off from HD? In 50 yrs you will probably have your own bionic brain Fred. Man that is totally scary!...LOL

Fred, you haven't acknowledged what i wrote you. The information i wrote was from the link you sent, saying a child cannot be tested without their knowledge and consent. Your son has had his rights taken away from him, by you having him tested without his knowledge.

In the next few years, the issue is going to change.

If we're presented with a virtual cure, there's no problem. If RNAi works, then we can test our children at birth, find out the CAG repeats and estimate a good start date for RNAi treatments (which I believe will have to be repeated every six months).

But more likely we are going to be presented with one treatment at a time that will delay onset while the technical difficulties of RNAi are worked out. Some researchers estimate that the 'cocktail' or combination treatment approach might be best started twenty years before onset. That's fine for the person who is positive with an expected onset at 40 (the average age of onset). He or she can test as an adult. But JHD and early onset is a possibility too. So then what? Do you test your child because he might be positive and might have enough repeats that you'd want to start treating him before he's an adult? It's one thing to say, "You have a gene that will cause you to develop a disease without treatment to prevent it. We can do that." And it's another to say "You have a gene that will cause disease and we can delay its onset with treatment."

Barb,Eric,

I am not taking it personally. Don't be fooled if I write very bluntly. I have the greatest respect for anybody's personal decision. I like the discussion, because it needs to take place. Believe me, I am not upset with anyone here. We have to be honest. Otherwise we are just some cheering squad.

To answer you directly Barb, You miss quote all the links. You said "saying a child cannot be tested without their knowledge and consent"

I read where it saids "should not" in the text, which I posted myself. "Should not" doesn't mean "cannot". See the difference?

But as I see it, and as the law sees it, he doesn't have any privacy rights from a custodial parent as a 12 year old. None, nadda. So as a legal issue, it's moot. If he wants to sue me when he's old, bring it on. After all, lawyers have to eat too.

Also, look at the extenuating circumstances. His mother's CAG was 47. It's not at all out of line for his CAG to actually increase from generation to generation. Therefore, he could quite possibly have a cag in excess of the 50 threshold for JHD and I didn't recognize it. (That was one of my talking points for getting the doctor to test).

His mother might have been considered to have JHD, she could have shown mental symptoms as early as 23.

Eric, suicide and HD are related only by the depression and fear the disease causes. Lisa tried to kill herself 4 times in her life. The first time she was 16 and had just found out about the HD. The last 3 where when she was disabled.

The last lucid thing she really did was take an entire bottle of Depakote (1000mg's). I went in and saved her. I found her and called 911. That was the 4th attempt (that I know of)

See Barb, that was against her wishes. She wanted to die instead of suffering through the final throads of HD. She didn't want to be in a nursing home like her Father was. She wanted to check out in her own home at her own time in a quiet and simple way. But I didn't let that happen. Did I violate her rights?

Now lets look at it like this. All of this affects ME too. If I had let her die with her condition in my house I'd have been changed with not attending her by adult protective services and my son would have been taken. Think about it. Even with a suicide note, I doubt very seriously if some action wouldn't have been taken against me.

Let's look at the genetic testing in how it affects ME. I have a son that could have a devastating disease. What happens to me? I am responsible for him for years yet. I'd be the one, like Eric, that would be responisible for his care. Shouldn't I know that before I buy my retirement pad in FLA?

I think it's within my legal/moral/ethical rights to know my future obligations.

See how it affects other people. It's one thing to say "you have to follow the 10 commandments or you may be condemed to hell" in an abstract way. But if the Lord God came down and threw somebody into hell on the 10 pm news, you'd not have a church pew empty.

Or you should stop smoking or you have a "higher risk" of cancer it's one thing. But if you find out your lung is black and there's an unknown mass in there, I bet you'd quit in less than 2 seconds.

So if I tell him he has to exercise or he "may" die it's one thing. But if I tell him he has to exercise ot this WILL happen, that's another isn't it?

I'll say again, I don't know when I'll tell him. But if he gets to the age he's dating, I'll tell him. Is it right for him to marry anyone without disclosing his status?

His mother told me about the disease. But she didn't tell me much. And I only found a paragraph in a book at the library that detailed it. I didn't even know it was a neurological disease.

How many of us know what crones disease is? Would you let your son/daughter marry someone with crones in the family without finding out the extent of the disease and what it can do?

Also, it seems hyhpoctrical to me that you can test an embryo, but not the baby. If this were going on now and my son was still in the womb and we both tested him as positive what would we have done? What are his rights in that senerio?

What happens when a mother finds out the father of her child is at risk for HD. The father doesn't want to test personally and ignores the issue. Does she have the right to test?

I'll summarize my points this way:

1) The testing of asymptomatic children is still an ethical delimia.

2) HD affects more than just the victim in so many ways so what we think about testing is changing rapidly.

3) Everybody has to sort these issues out in their own way

4) We are responsible for our children from birth to our death.



Edited 2 time(s). Last edit at 09/14/2006 04:00PM by Fred.

You're nuts Fred. Please dont say i mis quoted anything. Everything i quoted was a direct copy and paste. And why do you bring up crap about testing of an unborn baby. That's not what this discussion is about. But, to humor you, i will tell you, an unborn baby is still, by law, part of the mother's body, until the child is born, the child has no rights. And allthis crap about crones disease, that it would be your right to inform the family and crap, that's crap Fred, you're a control freak, and you've have taken away your sons rights. And you figure if you just throw more and bigger information at me that i will give up, because i'm a phd and confuse easily, well quit the crap because i'm tired of hearing your sorry excuses. And all this crap about would you let your son or daughter marry someone with a disease in the family without giving them full information. If a son or daughter are old enough to marry, they are old enough to make their own decisions without pops feeling it's his job to "inform" everyone. And why in the world are you bring God into this bogus discussion of yours Fred. Pile of crap.
PS Let's see if you can focus on what the discussion is about Fred, without going off on tangents about suicide and the ten commandments, and who knows what else. You took away your sons rights. You took away his right to decide when he is an adult, whether he wants to test or not. Why, because you are a control freak. I don't give a rats ass how many links you want to post to try and justify what you did Fred. It was morally and ethically wrong for you to take away his right to decide, and it was wrong for you to test him with out his knowledge, all for your own satisfaction, and that's what it boils down to Fred.



Edited 2 time(s). Last edit at 09/14/2006 04:22PM by Barb.

Barb,

Fred's not nuts.

Would you have had issues with your parents trying to discover your status? At age 6? Or at age 12? You wouldn't have known if they did. Fred's child doesn't know either. But now Fred understands what he may have to deal with. And he can direct his child to possible positive steps to prevent early onset. And that is a new take on a positive result.

I think that Fred is trying to be proactive, and not reactive.

I'm not sure how to copy and paste from a previous post - but someone asked how I could see a HD test as an indicator of future possiblities, similar in my analogy to an IQ test. Here is the basic logic behind this simplistic comparison. Currently I know my kids IQ scores - this is personal information about them (along with many other personal pieces of information I know about them). I chose IQ scores only because they are a numeric qualifier of potential - similar to a CAG count. These number both tell you something about a persons potential - but are not complete identifiers of their true outcome as an adult. I use the knowledge of my kids IQ to guide them in many ways - Knowing their genetic status and potential CAG count would also simply give me an indicator. They will develope HD at some point in their life - when, how and what symptoms are not predictable. Research is on going-and apparently very promising - their status might mean nothing in 10 years(let us all hope and pray). So to sum up - IQ means only a potential for processing information - HD + CAG only indicate the disease is in their future. Both pieces of information can change everything or nothing - depends on how you use them. Eric has strong point about parental misuse of this information - that's where a doctor uses their judgement about who, when and how to allow earlier testing.


Susan

Ellen, there is no justifying that what Fred did was wrong. It is stated in medical guidlines that it is wrong for a child to be diagnosed without the childs knowledge, period. You can justify it all you like, but wrong is wrong. And you do not need to know someone's hd status to live a pro active lifestyle. And uh yeah, duh, if my parents had tried to find out my status without my knowledge, your darned right i would be upset. Only a control freak would do that, go against all the protocol, to satisfy their own curiosity. And i'm getting really fed up with this discussion, because in life, some things aren't up for discussion, they are right, or they are wrong, they're not in some "grey area" that we all love to create, that feel good grey area that helps us justify why wrong is OK, when it's not.

Susan, do you get what a CAG count means??? You said the following:

"I chose IQ scores only because they are a numeric qualifier of potential - similar to a CAG count. These number both tell you something about a persons potential - but are not complete identifiers of their true outcome as an adult."

I am absolutely stunned and amazed. You are comparing CAG count to IQ scores??? IQ can change throughout a persons life. CAG count does not change. What do you mean the CAG count tells you something about a persons potential, but are not complete identifiers of their true outcome as an adult? Ah, duh, it is so a definite identifier of their outcome, there is no guess work, if you test positive for HD, it will not change and go away. A positive test result for HD is a complete identifier of their outcome as an adult. They will die from HD, unless they die from some other cause before that. What part of that seems incomplete to you???

I'm going to back out of this conversation because i'm getting too hot headed about all this and startying to insult people, so i'll just let you guys carry on, no personal insults intended.

Boy! what a lot to respond to! I'll just try to remember a few salient points.

CAG repeats bear no resemblance to IQ. IQ is a "best guess". The DNA test for CAG repeats is quite definitive. That's not to say that there aren't variations. But if you have a CAG repeat within a certain range YOU CARRY THE GENE. PERIOD!

Even if you're lucky enough to be relatively asymptomatic - you can still pass it on. You can pass it on in a more virulent form - or you can pass it on in a milder form. Your chances of passing it on are still 50%.

I agree totally with Fred that, "The testing of asymptomatic children is still an ethical delimia." But is seems that whenever anyone tries to challenge Fred with the "ethics" of it - Fred responds by defending the "legality" of it.

What does legality have to do with ethics, for heaven's sake???

I agree with Fred that, "Everybody has to sort these issues out in their own way". But Fred hasn't let his wife or his son "sort anything out in their own way". He has interfered in his wife's personal decisions - and he won't even let his son know that there are issues to be dealt with.

I don't even disagree that, " We are responsible for our children from birth to our death." But what constitutes "responsibility" to our loved ones? Deceiving them? Or arming them with the facts they'll need in order to survive?

Fred also says, "Also, it seems hyhpoctrical to me that you can test an embryo, but not the baby. If this were going on now and my son was still in the womb and we both tested him as positive what would we have done? What are his rights in that senerio?"

This one totally confuses me. From Fred's own words, it seems that Fred is defending his son's rights as an embryo - but he says flat out that his son HAS no rights as a minor child!

What did I miss, here?






Edited 1 time(s). Last edit at 09/15/2006 12:20AM by JL.

Fred says:

"The last lucid thing she really did was take an entire bottle of Depakote (1000mg's). I went in and saved her. I found her and called 911. That was the 4th attempt (that I know of)

See Barb, that was against her wishes. She wanted to die instead of suffering through the final throads of HD. She didn't want to be in a nursing home like her Father was. She wanted to check out in her own home at her own time in a quiet and simple way. But I didn't let that happen. Did I violate her rights?"


Violate her rights? Unless she had been declared legally incompetent, you certainly did!

You "saved her"??? She still has HD. You interfered with her wish to die.

And you have committed her to the nursing home that she dreaded.

I never implied that IQ and CAG were completely indentical indicators. I used them, and tried to explain, since they are similar. As far as I have read, the CAG does indicate HD is present in the genetic makeup - when onset will occur, which symptom come first and their severity, actual cause of death and many other unpleasant HD life events are not written in stone. CAG may give an educated guess - or as we call them SWAGs - scientific wild ass guess - as to when the events will begin to unfold. With the current research ongoing it appears many are optomistic about a treatment being reached in the next 10-20 years - this would cover when my children would be coming of an age to show symptoms - if they are positive for HD. There was nothing more to my comparison on knowing and using information about children to make decisions. No one dies of a low - or high - IQ, I understand that makes the two items seem uncomparable.

Susan