Thread: Genetic conditions and children Board: Oblivion / Ship of Fools.


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Posted by Hawk (# 14289) on :
 
Imagine you have Huntington's Disease. It is a particularly nasty genetic condition which starts to show symptoms at some point in your life, usually from your thirties to your sixties, although there’s no way of telling when. It involves emotional mood swings and anxiousness, cognitive and neurological degradation that develops into dementia, and chorea, which is an inability to control your movements. This starts with uncontrollable fidgeting and twitching but develops into more serious problems like difficulties with swallowing, chewing etc. After symptoms start, you usually have 15-20 years of suffering before it kills you. So far there is no cure, and current research has no idea when or if a cure may be possible, or indeed if there is any way to prevent or slow the onset or development of the symptoms.

Now, while this is bad news for you, it is also bad news for any children you may have since this is an inherited condition. You inherited it from your father, and there is a 1 in 2 chance of you passing it on to any child you have. On the other hand, you and your spouse would really like children. What do you do? There are some options.

1) Don’t worry about it and start a family anyway. There’s a 50% chance that your child will be okay, you can also hope a cure may be developed over the next few decades. However, these odds are poor, there’s no sign of a cure yet and there may never be one, and the gene is often degenerative over generations, so while you may be okay until you’re 50, your child may start developing symptoms at 30. Plus your child will have to go through all this anguish and these difficult decisions as well when they get older. Is this something you want to risk?

2) Prenatal screening. At 11 weeks pregnancy you can test the foetus and if they have the mutant gene you can terminate. This involves a serious ethical problem though, and the testing involves ramming a large needle through the womb, which is very painful and could cause a miscarriage or other complications.

3) Preimplantation genetic screening. Using IVF, you can fertilise the egg and grow it in a lab up to eight cells, then take one cell for testing and implant any normal embryos into the womb. This is less ethically difficult than terminating a healthy pregnancy. However, to get the eggs for IVF you have to hyperstimulate the ovaries, which is very painful. Also it costs a lot (about 10 grand per cycle) and there is about 25% chance of the implantation resulting in a pregnancy per cycle.

4) Donor sperm (or egg if you’re a woman with the condition). This removes any pain for the woman (apart from the usual agony of childbirth), it’s easier, cheaper and you can select the donor to be free of any genetic problems. However it means that you are not blood related to your child. Does this matter, surely if you are a parent to the child, then that is enough; is it selfish to want to pass on your genes? Are you making a child for your benefit or theirs? But still this is a difficult consideration.

5) Adoption. Similar problems to 4. It does mean both you and your spouse are in the same boat with regard to the heritage of the child. Plus you’re doing a good thing for society in caring for an unwanted child rather than just creating a new one. However, it is hard to get over the mind-set that neither you nor your spouse are the child’s ‘real’ parents. Perhaps this is foolish thinking but it’s hard to deal with. (This is assuming of course that the adoption agencies will allow you to adopt if you have Huntington’s – which isn’t certain.)

6) Don’t have children. This is a painful decision but your child will never have to go through the anguish of watching their parent suffer and die of Huntington’s.

Six options, unless you can think of others. This is a problem that many people have to go through, not just for Huntingdon’s but for many other inherited genetic conditions. In the above scenario, or other similar ones that you want to consider, what would be your decision?
 
Posted by Chorister (# 473) on :
 
Someone in our choir died from Huntingdon's. It was very sad seeing her decline so rapidly at such a relatively young age. But, by the time she was diagnosed, she already had children - so it's not always so clear cut as the OP suggests.
 
Posted by maryjones (# 13523) on :
 
Tangent/ I had amniocentesis (screening involving needle) at 20 weeks pregnancy. I remember it vividly as those of us waiting when first patient being screened started screaming. It turned out she was terrified of needles.
If we hadn't all been in those little gowns open at the back the rest of us would have fled. It was explained to us. I do not recall it hurting at all. (I don't recall it not hurting either.)/Tangent
 
Posted by lilBuddha (# 14333) on :
 
If one knew beforehand, 6. The other choices are understandable, but selfish.
 
Posted by Smudgie (# 2716) on :
 
I wouldn't want to tell anyone what they should or shouldn't do. It is a matter of personal conscience/choice and there are so many issues to take into account. But some things are certain. This is a dominant gene - if you've got it, you will develop Huntington's and the effect it will have on your children is not limited to their 50% risk of developing it (which is itself a massive thing to have hanging over you through puberty. I know - I know two different people who are having to cope with it) but also the devastating effect of them definitely having to watch you deteriorate with it, especially enduring the effects it can have on your mental/emotional state which is often far harder for those who love you to endure than physical disability or illness.

Not sure whether adoption would be an option if you had the Huntington's gene - unless maybe for a child who already may carry the gene - as the possible early onset would put the child at risk of losing yet another parent. Social Services might quite rightly have reservations about the suitability of the placement. And it is the child who has to come first... far more important than any doubts you might have about your ability to bond with another person's offspring. Adoption is tough - only very rarely is it not so - both for child and for parents and is indeed different in many ways from having a child by birth. I truly believe it should be entered into due to a desire to adopt rather than (or rather, parallel with) a desire to be a parent. But if you ask me, the mother of two adopted boys, whether there's a maternal bond between me and them.. well, I can't imagine a bond any stronger!

Sometimes in life we have to come to terms with tough decisions or circumstances. For many that decision or circumstance is about whether it is right, or indeed possible, to have children. It can be a moment of real heartbreak when you have to accept that it's simply not going to happen, or that following the path of bearing children would be done for purely selfish reasons.
 
Posted by Erroneous Monk (# 10858) on :
 
I have retinitis pigmentosa. Now, ok, blindness is not death from Huntingdon's. It's nowhere near. Nonetheless, it isn't something anyone would wish for their child (the strain I carry would cause blindness in a male child before they were 30).

We considered a list of options pretty much covering the ones set out here. We opted for (1). That doesn't mean it would be the right answer for someone else.
 
Posted by Marvin the Martian (# 4360) on :
 
I guess it depends on whether you think it's better for someone to die of Huntingdon's (or any other nasty inherited disease) or for them to have never existed at all.
 
Posted by lilBuddha (# 14333) on :
 
"better to never have existed at all" statement implies some sort of negative impact on the part of non-existent one. Instead, there is nothing. Neither good nor bad.
On the parent side, different story. Hard to quantify that.
 
Posted by Marvin the Martian (# 4360) on :
 
Not just the parental side. Think of anyone you know who has (or had) a nasty inherited disease - would you really prefer it if they'd never existed? Do you think they would prefer never to have existed?

And, frankly, why stop at inherited diseases? Should people living in hellish places not have kids so that they don't put them through it? Should only those lucky few individuals who can (virtually) guarantee a good, healthy, happy, long life for any children they may have consider leaving the condoms in the drawer?
 
Posted by lilBuddha (# 14333) on :
 
I am not giving any should or should not. Not judging persons who make a decision other than the one I would.
Stating a fact. It is selfish. Understandable, yes. Simple in practice? No.
 
Posted by no_prophet (# 15560) on :
 
Huntingtons and similar dominant genetic conditions are special and do not in any way compare with statistical risks for other conditions per Marvin the Martian. My tendency from an intellectual perspective would be to have been sterilized and consider other options for children, as difficult as these options are in terms of expense and waiting lists. I cannot imagine the specific pain with such a decision.

It might do to discuss the mind of God with such disease, but perhaps that a tangent to the specific discussion here.
 
Posted by Smudgie (# 2716) on :
 
The question of "not having existed at all" is a bit of a straw man - there are lots of children who have not existed at all. Each time I menstruate, that's a child who has not existed at all. That does not mean that my decision not to conceive a child outside a committed relationship (my decision and my opinion, not a judgement on those who choose otherwise) is to be seen as dooming a child to non-existance once a month!

However, if you ask someone with Huntington's whether they wish they had never existed at all, by all accounts the answer might often be "yes". Suicide and suicidal tendencies are much higher amongst people with HD than in the general population.
 
Posted by Think² (# 1984) on :
 
I think it is a shame that eugenics has become intellectually respectable again. There is a major social impact, the less disability and difference you permit, the less - ultimately - you will tolerate. The less you will accommodate, the less you will research.

Why spend on research for a cure for Huntingtons if you can 'cure' it by making sure people aren't born with it ?

We don't know if enough about the human genome to know what we are losing when we make these decisions either. If, for example, if you exclude feotuses with a statistically higher chance of bipolar disorder doyou then decrease your chance of creative geniuses as well ? Would Stephen Hawkin ever have been born if his risk of neurological disability had been known ?
 
Posted by lilBuddha (# 14333) on :
 
No one on this thread so far has advocated eugenics. As far as I read the responses.
One may advance an opinion as to the OP without ever thinking of making a policy.
 
Posted by mdijon (# 8520) on :
 
quote:
Originally posted by Chorister:
But, by the time she was diagnosed, she already had children - so it's not always so clear cut as the OP suggests.
So if her children got themselves tested they'd know if they had the gene or not and if they did they'd be in the fix that the OP describes.
 
Posted by Think² (# 1984) on :
 
I guess that depends on your definition of eugenics. But basically I take it to mean the attempt to manage reproduction so as to reduce the likelihood of given traits. I would take that to include genetic conditions. it is certainly the governments assumption behind the provision of prenatal screening, DNA screening and genetic counselling that they will reduce the incidence of such conditionsp overall in the population - even if they will support those couples whose chose to go to term, or have a baby with a higher risk of a genetic disorder.

(And of course we allow late abortion even when there is no risk to the mother for significant disability where we would not for a feotus without a disability - which demonstrates the assumption of differential worth in our legal system.)
 
Posted by Josephine (# 3899) on :
 
I think this article between Harriet Johnson and Peter Singer might be worth considering.
 
Posted by no_prophet (# 15560) on :
 
quote:
Originally posted by Think²:
I think it is a shame that eugenics has become intellectually respectable again. There is a major social impact, the less disability and difference you permit, the less - ultimately - you will tolerate. The less you will accommodate, the less you will research.

Why spend on research for a cure for Huntingtons if you can 'cure' it by making sure people aren't born with it ?

We don't know if enough about the human genome to know what we are losing when we make these decisions either. If, for example, if you exclude feotuses with a statistically higher chance of bipolar disorder doyou then decrease your chance of creative geniuses as well ? Would Stephen Hawkin ever have been born if his risk of neurological disability had been known ?
The problem with the argument is that Huntingtons has a 100% chance of the genetics causing the disorder. Bi-polar's presumed genetics do not have this sort of manifestation, where even those genetically identical at birth don't share the disorder at anything near that statistic.

Mostly genetics provide for a potential and not for a definite 'it will happen'. There are many insulators against the realization of disease, including cancers, mental illnesses, some forms or arthritis, diabetes. I think the case can be made that Huntingtons is special in this regard. Now what you might do about it is a different question.
 
Posted by chive (# 208) on :
 
We have a serious genetic condition similar to Huntingdons that runs in my family which affects males but females can be carriers. It killed my uncle and several of my father's cousins. My father has not got it but it is presumed that he is a carrier. My elder sister decided to have genetic testing done before she had her family. Thankfully she was negative. I haven't been tested as there is almost no chance that I will become a mother. I have no idea whether my younger sister has been tested or not, we've never discussed it.

I have discussed this with several of my cousins who are of a similar age to me - late twenties to mid thirties - and are at the stage in their lives where they are deciding whether or not to have children. Some of them have not been tested and had children because they don't want to know, others have been tested and decided not to have children because there is a good chance they would pass the gene on.

I could never criticise someone who chose not to have children especially those of my cousins who had to watch their fathers die horribly. I can understand the eugenics argument but like so many things it is an easier argument to have in the abstract than when faced with the genetic lottery that unfortunately my family have.
 
Posted by RuthW (# 13) on :
 
quote:
Originally posted by Think²:
I guess that depends on your definition of eugenics. But basically I take it to mean the attempt to manage reproduction so as to reduce the likelihood of given traits.
This seems a bit broad, though, seeing as choosing a mate who has certain qualities but not others fits this definition.
 
Posted by lilBuddha (# 14333) on :
 
Thank you Josephine. If Peter Singer were to give a talk near me, I would be tempted to boil tar and pluck feathers.

T2,

I do not advocate guidelines or criteria for reproduction in any form. I do not agree with aborting children because they are not perfect.
 
Posted by Sir Pellinore (ret'd) (# 12163) on :
 
I have read that article previously, Josephine and found it incredibly heartening. As you would probably guess, I am not a Peter Singer fan.

My position on the eugenics debate is that I do not believe in it as an enforced policy. Simple.

However there are, I think, valid circumstances where an individual would not wish to have children due to the possibility of passing on certain very serious genetic defects. I think this is a decision which would need to be taken with prayer, consideration and appropriate spiritual and medical advice and not under pressure.

I see this as an informed individual choice which must come from the individual without coercion.
 
Posted by mdijon (# 8520) on :
 
quote:
Originally posted by Think²:
I guess that depends on your definition of eugenics. But basically I take it to mean the attempt to manage reproduction so as to reduce the likelihood of given traits.
quote:
Originally posted by RuthW:
This seems a bit broad, though, seeing as choosing a mate who has certain qualities but not others fits this definition.
Agreed. By that definition eugenics is standard practice.

I think the definition of eugenics requires a government or another body adopts policy with the intent of having an effect on genetic make up of a population. If individuals intervene on their own behalf, in order to avoid an adverse outcome for their own children, then I don't think that is eugenics.
 
Posted by Moo (# 107) on :
 
I think that certain genetic disorders, such as Tay-Sachs, justify a decision not to have children. This is because the children do not live past the age of six, and it is heartbreaking for the parents to watch the deterioration.

A disorder that means spending life in a wheelchair is not so bad. Such people can enjoy life and be useful contributors to society.

I knew a child with normal intelligence who was so severely disabled she could not hold her head up. When she was eleven, she suffered an illness that almost killed her. The first time she came to church after her recovery, I noticed her looking around; she was obviously very pleased to be there and very proud of herself. It occurred to me that she probably valued her life more than anyone else in the church valued theirs; she had fought so hard for it. This is the type of person that many would say should be euthanized. I think the idea is outrageous.

Moo
 
Posted by Scarlet (# 1738) on :
 
quote:
Originally posted by Smudgie:
However, if you ask someone with Huntington's whether they wish they had never existed at all, by all accounts the answer might often be "yes". Suicide and suicidal tendencies are much higher amongst people with HD than in the general population.
Yes for me. I don't have to imagine having Huntington's. I do have it. I've said on the Dead Horses abortion thread that I did not wish to have been born and wish I had been given the option to stay an angel or whatever...I grew up in a cruel family (rabid mental illness and it was probably my mother who had HD and this likely twisted her behaviour even more). She died of suicide at 55. Perhaps because she had discovered the dismaying diagnosis of Huntington's.

Moreover, my parents never told me, or perhaps weren't aware that Huntington's was in our family. So I merrily had two children entirely unawares. They were grown and I have now reaped four grandchildren, prior to my learning my fate. Luckily, I believed in the premise of Zero Population Growth at the time, so my husband and I only replaced ourselves by having two. Likewise my children have each had two...

I was literally blindsided by my diagnosis and now it seems my sister has it also. So that's 100% for our risk outcome! [Frown]

If I had known, I would not have had children ~ since they were born in the 1970's when much of the OP options were not readily available.
 
Posted by mdijon (# 8520) on :
 
I know that we aren't discussing an abstract problem and that people with Huntington's exist. Of course they exist. But it's still a shock when you meet someone who gives a personal account.

Thank you for posting.
 
Posted by comet (# 10353) on :
 
I don't have Huntington's, but of my father's 5 genetic children, all five of us have/had disabling autoimmune disorders; my eldest sister's contributed to her death. Mine will probably eventually kill me or contribute to my death also. the other three are on a slow march toward lives in wheelchairs and living with epic pain.

Dad was tested for some gene or other years ago, as was many of my siblings and a few of their children. sure enough - it's there. Dad now has some weird sort of guilt, and in low moments has expressed regret for having fathered any children, as if he could have "spared" us this. I reject this idea. I like life. yep, it's hard. and MS sucks giant trucker ass. But to not have ever existed?

I have three children - and the choice of whether or not to give them the danger of autoimmune ugliness wasn't on the table. I had symptoms, but we didn't know of what. Now - two of my 3 kids are being watched and/or tested for similar neurologic disorders. this scares the hell out of me because I know what they might be in for and I wish with all my heart to spare them from this. But my kids are WONDERFUL. they have already contributed great things in their young lives. they have fun. they laugh a lot. they contribute positively to their community and their world. I can't regret having had them, not for a minute.

we are more than the sum of our tricky genetic problems. I would hope on Saint Peter's accounting ledger my life comes out to having done enough good to make up for whatever burden I am to others in the long run. Personally - illness sucks, but I'm more than an illness.
 
Posted by mdijon (# 8520) on :
 
quote:
Originally posted by comet:
I'm more than an illness.
Absolutely. Everyone is. But it isn't clear to me that that insight alone is definitive or should be definitive when someone decides whether or not to use genetic testing to reduce the chances of having a child with a particular disease.
 
Posted by Josephine (# 3899) on :
 
quote:
Originally posted by Scarlet:
I don't have to imagine having Huntington's. I do have it.
Sometimes words are totally inadequate. I have no idea what to say, and being the person that I am, I so want to say something. Something kind, helpful, useful. I suspect there isn't anything. I wish there were.

[Votive]
 
Posted by comet (# 10353) on :
 
quote:
Originally posted by mdijon:
quote:
Originally posted by comet:
I'm more than an illness.
Absolutely. Everyone is. But it isn't clear to me that that insight alone is definitive or should be definitive when someone decides whether or not to use genetic testing to reduce the chances of having a child with a particular disease.
of course it's not definitive, those decisions can't be made on the basis of one sentence or one statement or one opinion. we're talking big stuff, here. I was just putting in my point of view. if we're going to be discussing whether or not to have children at all based on a genetic roll of the dice, one of the things I want folks to remember is that life is way more than an illness, and even the suckiest existences have their good, too. a human IS more than their genetic make-up. Woody Guthrie had Huntington's (if my memory serves). Would the world be as rich if he had never been born?
 
Posted by Scarlet (# 1738) on :
 
quote:
Originally posted by comet:
Woody Guthrie had Huntington's (if my memory serves). Would the world be as rich if he had never been born?
Yes he did.

...so we need to be born and suffer to enrich the world? It's too bad we can't take that time machine back and ask him. But of course, during a majority of his final years, his mind was gone and he was abusive to others (and himself). So he wouldn't be able to cogently reflect.

Others would have (and did) take up the mantel of folk-singing and stirring up the labor movement. Suffering for arts sake is so overrated anyway. Kurt Cobain comes to mind.
 
Posted by Nicolemrw (# 28) on :
 
I don't think the arguement that the world would be less because of some persons nonexistence is particularly valid. For every person who exists there are a huge multitude who don't exist because the sperm that would have concieved them lost the race to the egg. Is the world richer or poorer for their non-existence? How could we possibly know?

I exist because my mother had a miscarriage. If that fetus had come to term I never would have been concieved. Is the world better or poorer for this?
 
Posted by Sir Pellinore (ret'd) (# 12163) on :
 
quote:
Originally posted by Nicolemrw:
...

I exist because my mother had a miscarriage. If that fetus had come to term I never would have been concieved. Is the world better or poorer for this?
I think we are all here Nicolemrw 'due to circumstances beyond our control'.
[Smile]

Having been born, involuntarily, I think we just need to get on with it and live as decent and as moral a life as we can.

[Votive]
 
Posted by Think² (# 1984) on :
 
quote:
Originally posted by mdijon:
quote:
Originally posted by Think²:
I guess that depends on your definition of eugenics. But basically I take it to mean the attempt to manage reproduction so as to reduce the likelihood of given traits.
quote:
Originally posted by RuthW:
This seems a bit broad, though, seeing as choosing a mate who has certain qualities but not others fits this definition.
Agreed. By that definition eugenics is standard practice.

I think the definition of eugenics requires a government or another body adopts policy with the intent of having an effect on genetic make up of a population. If individuals intervene on their own behalf, in order to avoid an adverse outcome for their own children, then I don't think that is eugenics.
Fair point , I expressed myself poorly. My concern is that individual decisions are being influenced by unexamined assumptions in public policy and mainstream discourse.
UK healthcare policy is geared toward the reduction of births of disabled children. Occasionally, parents sue health trusts because screening has failed to pick up a disability and they now have a disabled child.

There are a number of reasons for trying to avoid the birth of a disabled child, or an individual who will become disabled in later life:

To prevent suffering - perhaps informing more of individuals decisions
To improve genetic inheritance - effectively to 'filter out' a condition over time
To avoid the birth of an individual you consider to be of less worth

Arguments over who might not have been born are basically an attempt to address the second two points. We don't know enough to know what else we are filtering out when we pick a target, and examples of people who unambiguously demonstrate the benefit of their existence.

I know that I will die, with one hundred percent certainty - I know if I die of natural cause, given my family history, that is likely to be in my 80s or 90s - therefore I know that by the time I die I will be cognitively impaired with something like a 30% chance of full blown dementia, I will have multiple health conditions - probably arthritis, recurrent skin cancer and bowel problems maybe to the point of rectal polapse each time I defecate (going on family history here), I will probably experience at least one stroke and may end up in institutional care.

I don't think our mortality allows us to avoid suffering.

[ 14. April 2012, 08:36: Message edited by: Think² ]
 
Posted by lilBuddha (# 14333) on :
 
quote:
Originally posted by Think²:
Occasionally, parents sue health trusts because screening has failed to pick up a disability and they now have a disabled child.

There are a number of reasons for trying to avoid the birth of a disabled child, or an individual who will become disabled in later life:

To prevent suffering - perhaps informing more of individuals decisions
To improve genetic inheritance - effectively to 'filter out' a condition over time
To avoid the birth of an individual you consider to be of less worth

Arguments over who might not have been born are basically an attempt to address the second two points. We don't know enough to know what else we are filtering out when we pick a target, and examples of people who unambiguously demonstrate the benefit of their existence.

I know that I will die, with one hundred percent certainty - I know if I die of natural cause, given my family history, that is likely to be in my 80s or 90s - therefore I know that by the time I die I will be cognitively impaired with something like a 30% chance of full blown dementia, I will have multiple health conditions - probably arthritis, recurrent skin cancer and bowel problems maybe to the point of rectal polapse each time I defecate (going on family history here), I will probably experience at least one stroke and may end up in institutional care.

I don't think our mortality allows us to avoid suffering.

 
Posted by lilBuddha (# 14333) on :
 
quote:
Originally posted by Think²:
Occasionally, parents sue health trusts because screening has failed to pick up a disability and they now have a disabled child.
I am not a huge fan of screening. This is the road to eugenics and children as conveniences.
quote:
Originally posted by Think²:

To prevent suffering - perhaps informing more of individuals decisions
To improve genetic inheritance - effectively to 'filter out' a condition over time
To avoid the birth of an individual you consider to be of less worth.
The first born of compassion, and my stance, though I fully admit I may be wrong. But, only as a decision made before attempting procreation.
The second might sound right on the surface to some, but easily leads the the third which is wrong.

ETA: sorry about the double post. Editing is a pain on the iPad, meaning I need be more careful.

[ 14. April 2012, 13:33: Message edited by: lilBuddha ]
 
Posted by mdijon (# 8520) on :
 
quote:
Originally posted by Think²:
There are a number of reasons for trying to avoid the birth of a disabled child, or an individual who will become disabled in later life:

To prevent suffering - perhaps informing more of individuals decisions
To improve genetic inheritance - effectively to 'filter out' a condition over time
To avoid the birth of an individual you consider to be of less worth
Personally I think that's put very clearly. I expect that the first is what is uppermost in most prospective parents' minds when they approach these issues, and I think they should have the freedom to make an informed decision about genetic testing in order to do that.

And that is also why the arguments about the worth of disabled individuals to themselves and society aren't relevant. No-one should be arguing access to testing on the basis of such arguments or asking the prospective parents to weigh up their decisions on that basis. It should be on the basis of preventing suffering for the parents and for the (potential) child and that alone.

I think you are right that there are uncertainties, but I think that where the genes concerned are Mendelian (i.e. single locus, and an all-or-none outcome if you get it) then the potential risk to the parents and to the population is pretty low. And may be simply a fig-leaf rationalization of an appropriate but vague sense of unease about genetic selection.

There is another take on the intersection between individual choice and eugenics. Where there are recessive genes that lead to illnesses with protracted courses and death in adolescence or late childhood, then the availability of testing might actually increase the frequency of genes in the population.

For instance: A hypothetical family have a child with thalassemia. Their child requires frequent blood transfusions and eventually iron-removing therapy with frequent hospital visits, taking up a lot of their time, and they don't have other children. They don't want the risk of another child with the same illness, and can't think about much else anyway. Their child dies in his/her thirties, or if they don't is infertile or chooses not to have their own children. Hence their genes aren't passed on.

On the other hand, the might go for pre-natal testing, have an early termination, don't have that child... and instead have two children without thalassemia disease, but who both carry the gene (having got one copy of it from one parent) and hence might pass it on to their children.

In that instance the eugenic purpose is actually frustrated - the overall frequency of the gene in the population might go up. But the humanitarian purpose is achieved, i.e. of avoiding the severe manifestation of the disease and suffering for those parents.
 
Posted by Think² (# 1984) on :
 
In public health planning they use the concept of a 'qualy' - means a quality adjusted life year. (The adjustment comes from national surveys asking members of the public how they would feel about living with such and such a disabling factor.) they make some decision about how much they are prepared to get one more qualy for an individual.

Settinng aside the financial issue, if you are deciding about children based on what you think may happen to them, then it maybe a useful concept to think of. We will all die, and most will suffer doing so - most people are disabled to some degree the last five years of their life, many live with chronic long term health conditions. What are the relative risks to how many qualys you think your child may get ?

Plus the odds of getting hit by a bus, contracting an early cancer etc.

And it is the case that most people don't choose to kil themselves even if they have a terminal condition, and about a quarter of the population get a mental health problem at some point in their life.
 
Posted by Mary Marriott (# 16938) on :
 
quote:
Originally posted by Marvin the Martian:
I guess it depends on whether you think it's better for someone to die of Huntingdon's (or any other nasty inherited disease) or for them to have never existed at all.
This really concentrates my mind.
 
Posted by mdijon (# 8520) on :
 
quote:
Originally posted by Think²:
about a quarter of the population get a mental health problem at some point in their life.
I don't know if I can really believe that. The last time I tried to look up the original references for that I found them very unconvincing. Obviously it depends on the definition, but it seemed to me that one needed a very broad definition of mental health problem to get to one quarter. I suppose the same could be said of physical health - is it really a physical health problem if you visit a GP complaining of a sore throat or does one draw a higher threshold?

But with your broader issue I think what you are saying is that there's a lot that can happen to impact one's quality of life that is unpredictable. Hence why worry so much about a single gene?

When the single gene concerned is especially devastating at a premature age, I think it is wrong to compare that with the predictable problems of the general population in infirmity in old age.

It is possible a future society will judge our vulnerability in old age as horrendous, and a price not worth paying for life, but all we can go on is our present expectation for the general population. And I think prospective parents should be entitled to consider the outcomes for their children against that standard.
 
Posted by Scarlet (# 1738) on :
 
quote:
Originally posted by mdijon:
When the single gene concerned is especially devastating at a premature age, I think it is wrong to compare that with the predictable problems of the general population in infirmity in old age.
Yes, this exactly.
 
Posted by RuthW (# 13) on :
 
quote:
Originally posted by Think²:
There are a number of reasons for trying to avoid the birth of a disabled child, or an individual who will become disabled in later life:

To prevent suffering - perhaps informing more of individuals decisions
To improve genetic inheritance - effectively to 'filter out' a condition over time
To avoid the birth of an individual you consider to be of less worth
I'd add another: some people think -- and they might be right -- that they wouldn't be able to handle having a disabled child. Or they think they might not be able to handle it and don't want to find out the hard way that they can't.
 
Posted by RuthW (# 13) on :
 
Not meaning to get at you, Think² -- I just think there's a lot more gut feeling that goes into these decisions than there is attempts at quantifying quality of life. My own decision not to have children at all had nothing to do with potential genetic conditions, but I didn't sit down and make a list of pros and cons or try to quantify anything about it. People in public health have spreadsheets and numbers, and so they should, but it seems to me that when individuals are making these decisions, they are a deeply personal and emotional.
 
Posted by Niteowl2 (# 15841) on :
 
quote:
Originally posted by mdijon:

And that is also why the arguments about the worth of disabled individuals to themselves and society aren't relevant. No-one should be arguing access to testing on the basis of such arguments or asking the prospective parents to weigh up their decisions on that basis. It should be on the basis of preventing suffering for the parents and for the (potential) child and that alone.

I wish it were that simple. I can't tell you how many times as a disabled person I've heard arguments put forth that "quality of life" and "having a life worth living" is reason enough to advocate infanticide as well as abortion for any disabilities detected. It is an aspect that MUST be discussed. Trust me, it will be one of the things prospective parents may be thinking and even pressured to make a decision upon if we don't make it part of the discussion. I was fortunate that my parents raised me to be independent and not accept society's views on what I could or should do and that I was every bit as valued a child as my 3 "normal" siblings.

I struggle with the extreme genetic diseases like HD and Muscular Dystrophy. My parents mainstreamed me in public school long before mainstreaming began, but during my short beginning at a school for disabled kids (where there were NO expectations on us to perform academically at all, (hence my parents decision to put me in regular school) I was friends with 3 boys with MD and I know the horrific details of how 2 died and I have a feeling I'd be opting for genetic screening as I don't think I could bear watching a child of mine go through it. That said, I don't think a child with a physical or mental disability should be aborted - there are options available for parents. My parents availed themselves of financial assistance until they could afford the medical care and devices I needed until they could afford it. To be honest, I didn't grow up thinking of myself as disabled.

[ 15. April 2012, 10:54: Message edited by: Niteowl2 ]
 
Posted by Think² (# 1984) on :
 
I get that, but what concerns me is that given that implied eugenicist assumptions have become common in public and media discourse, a portion of that gut feeling is made up of unexamined assumptions about what it means to be disabled. And what is a long term good.

I also think we are more generally sold an unrealistic expectation of life - which makes it harder to cope when our expectations are not met.

I personally have more of an issue with termination or embryo selection than I do with choosing not to have children in the first place - which is tied up with various dead horse related reasons. Somewhat intensified by the provision for late termination.

[Crossposted in reply to Ruth]

[ 15. April 2012, 11:08: Message edited by: Think² ]
 
Posted by Bullfrog. (# 11014) on :
 
quote:
Originally posted by lilBuddha:
If one knew beforehand, 6. The other choices are understandable, but selfish.
I don't accept that 6 is necessarily altruistic.
 
Posted by North East Quine (# 13049) on :
 
Originally posted by Niteowl:

quote:
Trust me, it will be one of the things prospective parents may be thinking and even pressured to make a decision upon if we don't make it part of the discussion.
Routine ante-natal scanning showed that our second son, David, had gross skeletal deformities. Our ante-natal care (NHS) was excellent and compassionate BUT each time a new problem was detected, it had to be recorded in our notes that we were fully aware of the implications, that we had been offered a termination, and that we had made an informed choice to continue with the pregnancy. This was to protect the hospital from any possibility that we would subsequently sue, because, as Think2 has pointed out:

quote:
Occasionally, parents sue health trusts because screening has failed to pick up a disability and they now have a disabled child.
I fully understood the reasons, and am not criticising the hospital, but it is very hard to be continually offered an abortion you don't want!

Think2 also made the point:

quote:
Why spend on research for a cure for Huntingtons if you can 'cure' it by making sure people aren't born with it ?
By the latter half of the pregnancy we were getting into unknown territory; our consultant had only dealt with similar pregnancies which had been terminated; our midwife likewise. Nobody in our hospital (a large one) had any experience of a similar full term pregnancy. (Fortunately I was able to access a national support group.) My consultant said that David's condition (one of the bone dysplasias, probably thanatrophoric dysplasia) is an area where research is almost exclusively on early detection and early offer of termination, and that medical knowledge of delivery and neo-natal care might actually decrease.

In the event David was stillborn, and so I can't comment on what quality of life he might have had.

David's condition was most likely the result of a shared faulty recessive gene, in which case our older children have a 2 in 3 chance of carrying the gene, but only a 1 in 10,000 chance of having a partner with the same recessive gene. So they will face the options in the OP, but option 1) -Don't worry about it, would be a reasonable option, given the low probability.
 
Posted by Scarlet (# 1738) on :
 
quote:
Originally posted by Think²:
Why spend on research for a cure for Huntingtons if you can 'cure' it by making sure people aren't born with it ?
Not all prospective parents knows their genetic history. I did not. Likewise, not all parents live near so called "Centers of Excellence" where genetic counseling and all the options in the OP are available to be considered as options. In some cases, Huntington's symptoms are opaque or do not become apparent before the victim has died of other causes.

Unless we routinely screen all parents for all possible potential genetic disorders and then weed them out as candidates to be allowed to give birth, this is entirely impossible; especially amongst the poor, those without optimal medical care and those lacking unlimited funds for tinkering with your not yet created child's gene pool.

Besides, that really would be eugenics.

As well, that is a cruel attitude for those who are already living with it, or will soon discover (as I did) that, guess what; you were created with a dastardly flaw.

(typo...)

[ 15. April 2012, 15:19: Message edited by: Scarlet ]
 
Posted by Think² (# 1984) on :
 
That as exactly my point Scarlet, research for the living will be become scarcer - which is not right.
 
Posted by lilBuddha (# 14333) on :
 
quote:
Originally posted by Bullfrog.:
quote:
Originally posted by lilBuddha:
If one knew beforehand, 6. The other choices are understandable, but selfish.
I don't accept that 6 is necessarily altruistic.
Not necessarily, no. One could make the same decision for selfish reasons.
 
Posted by mdijon (# 8520) on :
 
I think it is true that research funding is proportional to the degree of suffering caused by the problem. Of course there are skews introduced by politics and whether the diseases affect wealthy Westerners or poor parts of the world etc, so that although it often isn't in the real world it really should be.

However the argument that one shouldn't alleviate the suffering associated with a particular condition so that it remains a higher public health priority seems self-defeating to me.

[ 15. April 2012, 17:34: Message edited by: mdijon ]
 
Posted by Think² (# 1984) on :
 
Granted, but you are not alleviating suffering when children with the condition are not born. It is important that we don't confuse screening with curative research.

In the specific case of Huntingtons we are talking about inevitable suffering and death. But we all face inevitable suffering and death. Which takes us back to qualys. Recent research suggests Huntington's "protects" against cancer. You have a 1 in 3 chance (minimum) of getting cancer, Obesity raises your chance of cancer, but it gives you some protection against osteoparosis. If you want to die rapidly, you'd do best to die of heart attack or a stroke - but if you lived the kind of lifestyle to raise that risk, then you would probably die young.

It is only worth looking at risk, if you look at the alternatives.
 
Posted by mdijon (# 8520) on :
 
quote:
Originally posted by Think²:
In the specific case of Huntingtons we are talking about inevitable suffering and death. But we all face inevitable suffering and death... Recent research suggests Huntington's "protects" against cancer.
The protection that Huntington's may or may not provide against cancer is irrelevant. It does nothing to mitigate against the very real suffering the condition brings.

Saying that we all suffer and die is not an argument. On that basis why treat anything at all? You'll just die of something else, or suffer in some other way.
 
Posted by Think² (# 1984) on :
 
The suffering you will face is no less 'very real'. And again, we are not talking about treating the condition, we are talking about either choosing not to have children at all or attempting genetic selection.

Of course if we tried to screen out genetic risk for all adverse health conditions we'd be left with nothing. So no one suggests that - so what is essentially being discussed is what conditions/risks are so bad that (if you think genetic selection of this form is OK) you would select out.

So is that determined by whether the conditions is inevitable or whether you are taking a gamble, by what amount your life expectancy is shortened, by what degree you will suffer more and/or longer than could expect to without the specific condition under consideration ?

You can't compare with nothing.
 
Posted by mdijon (# 8520) on :
 
quote:
Originally posted by Think²:
The suffering you will face is no less 'very real'.So is that determined by whether the conditions is inevitable or whether you are taking a gamble, by what amount your life expectancy is shortened, by what degree you will suffer more and/or longer than could expect to without the specific condition under consideration ?

You can't compare with nothing.
I'm not completely sure, but I think you are saying that a line has to be drawn somewhere to distinguish between "bad genetic deal which leads to premature death and suffering" vs "sub-optimal genetic deal which heads towards the tail of human experience" which is partly arbitrary.

If so then I think I agree with that, except that it seems very obvious to me that screening for Huntington's is miles within the "bad genetic deal which leads to premature death and suffering".

I realise there might be a slippery slope, but I think just about anything can be cast as a slippery slope if one tries.
 
Posted by OliviaG (# 9881) on :
 
You only have to look around to see that "normal" people are by no means guaranteed a life free from pain and suffering, illness and accident. OliviaG
 
Posted by anoesis (# 14189) on :
 
quote:
Originally posted by Think²:


Why spend on research for a cure for Huntingtons if you can 'cure' it by making sure people aren't born with it ?
It's perhaps a bit tangential to the main discussion, but I work for a university with a medical school and a lot of associated biomedical research, and I can assure you that the search for a cure for Huntington's is very much alive, that the people working on it do not in any way have the attitude you have posited above, and that it is in fact one of the best funded - probably THE best funded - of our medical research groups, and that the funding comes from all over - I mean from private, institutional, government and pan-governmental sources. There is not, as far as I can see, a lack of will to address the lived experience of those with Huntington's because it 'doesn't need to happen', for what it's worth.
 
Posted by Think² (# 1984) on :
 
At the moment, it is not so much the researchers themselves I am worried about as government research priorities and the development of a fault concept.

We are starting to develop a why should we pay for people who smoked, are fat, who drank, who now need healthcare attitude I don't want to see that become - you didn't have to have this disabled child, so therefore we will expect you to cotribute more towards healthcare costs. But I can easily see that as likely to happen, we already have the why have lots of children if you can't pay for them meme well established in the tabloids.
 
Posted by RuthW (# 13) on :
 
quote:
Originally posted by Think²:
we already have the why have lots of children if you can't pay for them meme well established in the tabloids.
Once it became a lot easier for having children to be a choice instead of something that just kind of inevitably happened to most people, this stage of the debate about who should pay for the huge costs of raising children was inevitable, given the high premium placed on individualism in Western societies, most especially in the U.S. And here in the U.S. where we are so invested in individualism, more of those costs are shifted to parents. If you have kids, it's on you to figure out what to do with them until they reach school age; daycare is horribly expensive and most people don't get much help with those costs.

Here's another angle on it: what about the costs of educating children who have special needs? The state is required to provide an education for all children, and in the cases of some children that is enormously expensive. Education dollars are finite, so loads of money spent to educate children with special needs means less money for other kids.

And I don't quite buy the only answer I can see, which is that children are everyone's responsibility. They are more their parents' responsibility than they are mine. Other than my involvement in the lives of the children of a few friends, my main responsibility for children in our society comes in the form of paying taxes. And I'm happy to do that; it's part of living in civilization.

What it comes down to with children of all sorts, with all levels of need, is that individuals are making decisions with profound public consequences. While the "why should I pay for those irresponsible people's kids?" thinking is anti-social and inhuman, there is an aspect to it that I don't think is mean or crazy.
 
Posted by Think² (# 1984) on :
 
Children are in the greater public interest, society needs them. Or it will collapse.

If you want to be mercenary about it, you can point to the economic benefits of children with special needs - they create demand for a sector of the service and medical industry.

[ 15. April 2012, 23:02: Message edited by: Think² ]
 
Posted by art dunce (# 9258) on :
 
There is little support for children of special needs in this country and so families will choose not to bring those children into the world. Everyone I know who is at risk (and even some who are not) have amnio since they cannot afford to risk the future of their usually existing children to be bankrupted by a special needs child, It's the world we love in and it's only going to get worse as the economy and lack of family/communiy connection is strained.
 
Posted by Latchkey Kid (# 12444) on :
 
quote:
Originally posted by RuthW:
I'd add another: some people think -- and they might be right -- that they wouldn't be able to handle having a disabled child. Or they think they might not be able to handle it and don't want to find out the hard way that they can't.
A likelihood of Down's is why we had an amnio.

And I wonder if there is much difference between not having any kids (option 6) and restricting the number. I was pretty sure that two non-disabled kids was as much as I could manage.
 
Posted by OliviaG (# 9881) on :
 
quote:
Originally posted by art dunce:
There is little support for children of special needs in this country and so families will choose not to bring those children into the world. ...
Which also means that there is little support for children (or adults) who become "special needs", either temporarily or permanently. (In many countries, sadly.) All it takes is a bump on the head to completely change your life. We should provide support, because any one of us might also need that kind of care someday. Even if there were no genetic illnesses, there will always be special needs. OliviaG
 
Posted by Think² (# 1984) on :
 
quote:
Originally posted by Latchkey Kid:
quote:
Originally posted by RuthW:
I'd add another: some people think -- and they might be right -- that they wouldn't be able to handle having a disabled child. Or they think they might not be able to handle it and don't want to find out the hard way that they can't.
A likelihood of Down's is why we had an amnio.

And I wonder if there is much difference between not having any kids (option 6) and restricting the number. I was pretty sure that two non-disabled kids was as much as I could manage.
The decisions about response to screening results are, I think, probably fairly strongly influenced by one's view of abortion. Whether you see the widespread termination of embryos with disabilities as a problem or not is influenced in the same way.

I think there is a difference between choosing not to have children and embryo selection.
 
Posted by Niteowl2 (# 15841) on :
 
quote:
Originally posted by OliviaG:
quote:
Originally posted by art dunce:
There is little support for children of special needs in this country and so families will choose not to bring those children into the world. ...
Which also means that there is little support for children (or adults) who become "special needs", either temporarily or permanently. (In many countries, sadly.) All it takes is a bump on the head to completely change your life. We should provide support, because any one of us might also need that kind of care someday. Even if there were no genetic illnesses, there will always be special needs. OliviaG
Most people who have no problem with infanticide or automatic abortion of infants with any type of disability generally are willfully ignorant of the fact that the door to killing one opens the door to killing the other and that it may be them some day - some wanting to pull the plug themselves or horrified that society wants them gone.
 
Posted by art dunce (# 9258) on :
 
In my circle it isn't abortion beliefs that sway decisions but amount of familial and community support, age and money. Younger, poorer less established couples know they cannot bear the burden especially in the US where there is little support while older established couples, especially those who are wealthier can more realistically afford all of the costs associated whether it be visits with specialists, expensive treatments/surgeries, hospitalizations, occupational therapies etc. If you already have children and are stretched you are afraid of ending up living in your car. I also have a couple of friends with inherited diseases in their families and their views are heavily influenced by the suffering they witnessed other family members enduring.
 
Posted by romanlion (# 10325) on :
 
My great neice has Gaucher's, a nasty genetic disease.

Her young parents were screened to determine where it came from, and oddly her father is a carrier of what they call a double-copy.

Any child he ever has will have Gaucher's, and possibly a much nastier version than his daughter has now.

She must have a bi-weekly enzynme therapy at a cost approaching half a million dollars per year for as long as she lives, which will likely be no more than 20 or 25 years.

#6.
 
Posted by mdijon (# 8520) on :
 
quote:
Originally posted by Think²:
We are starting to develop a why should we pay for people who smoked, are fat, who drank, who now need healthcare attitude
At least with regard to the research effort I can reassure you that billions are spent looking for cures to heart disease cause by smoking, over-eating and lack of exercise, and very little in comparison spent on malaria, malnutrition and hypothermia.

It seems to be the potential market that dictates the greatest research effort rather than the moral deservedness of the stricken.
 


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