Re: EDS...Fertility in Men and Women...seven month EDS babies

[Guest guest]

> I debated whether or not to add to this thread about reproduction, for

> fear of mortally offending others here, but...

Reproduction issues are a matter of personal choice. There are basically

three places where people stand on reproduction and EDS.

1) Diagnosed after already having children. Diagnosis came too late to

effect reproductive decisions.

2) Diagnosed before having children and chose to have children anyway.

3) Diagnosed and therefore decided not to have children.

Where each person fits on this spectrum is a very personal matter and no

individual choice is right or wrong. The right choice is the one that you

can live with and feels right to you.

> I really become ill at the thought of deliberately risking bringing

> someone into the world to suffer as I have done.

That was a major part of the decision my husband and I made when deciding

not to have children. We aslo both have EDS, which increased our risks of

passing it on. My parents knew nothing of EDS when I was born, but they

chose to only have one child because my mother is adopted and her medical

history is unknown. She felt comfortable with one, but feared what she

might pass on to other children. As it turns out, EDS came from my father.

Having children is a huge risk, EDS or not. You simply don't know the

millions of things that can be in your genes that can affect the health of

your child. But having children can also bring tremendous joy and love to

one's life. In all things, it is a trade off. You take the good with the

bad.

And even those of us that choose not to have children may find life has

other surprises in store. My husband and I adopted a dog 2.5 years ago with

the intent of training him as a service dog. This morning, I spent the most

gut wrenching 90 minutes of my life watching my almost 3-year old " baby "

Sherlock cry out in pain while my father and the vet tried to hold him down

for X-rays of his hip. I didn't want a child with EDS, but it seems I have

a dog with a dislocating hip - just like mine! How's that for irony. I see

him struggle to climb into bed and to get up from the floor and my heart

breaks because I know more than most people the pain he is in.

> I've remained single in good part for this reason.

Another of our support group members locally has done the same thing. I

personally always knew I wouldn't have children, but the idea of living life

without a spouse never occured to me. You don't have to sacrifice happiness

to avoid having kids. You just have to find someone willing to compromise

and share your life just the way it is. But if you are happy being single,

then good for you. Again it's a matter of making personal choices and

making the decisions that are right for you and ignoring whether anyone else

would have chosen differently.

-Barb

[Guest guest]

In my original message to this Yahoo newsgroup, ceda ,

I am of course, referring to the choice of knowingly reproducing the

gene(s) for Ehlers-Danlos Syndrome (EDS) or other serious genetic

illnesses.

Now, I hope [you] won't take what follows too personally - I'm arguing

against a general position, and I know that many others in this

society would offer arguments very similar to those you've offered.

But I think the matter is very important, so I hope that you'll permit

me to have a different opinion, and to explain what that might be. As

well, I've mixed perhaps a bit too much from my background in

Professional Philosophy into the argument that follows, but it is hard

to avoid doing so, since this sort of question is what they're paid to

explore. Also, I know that it takes time to absorb the implications of

a diagnosis (maybe forever) and that we all have to make decisions in

the meantime, anyway. I don't blame, I think morality is possible

without anger (although a particularly sharp phrase in my original

message might be thought to belie this.)

You said:

>> Where each person fits on this spectrum is a very personal matter

and no individual choice is right or wrong.

In the strongest sense, personal matters are, by definition, those

which affect no-one else, although the term may be used by extension

to refer to matters falling under general societal agreement as

uncriticisable. This affects someone else, extremely - note the no

doctor could do this (or suggest anyone else do it) for any

experimental or research purpose, no matter how valuable, without

extreme professional sanction.

If you mean something else by personal matters, I'm not sure what that

would be.

If you mean that it is not illegal, that's true, but of course it

hardly follows that what is not yet illegal is harmless, or good.

I'm not proposing a law, but I'm also pretty sure that one will come

with enough time and medical progress (what diseases would be

prohibited I don't predict) - perhaps to humanities loss, since

illness seems to have been a frequent spur to creativity and

iconoclasticism. By predicting such a law I'm not advocating or

arguing for it, merely judging from history and law as I understand

them that this will happen eventually, with or without discussion

here.

I have known one professional Philosopher, of ethics, to argue that

the yet unborn have no rights, and that, therefore, even causing the

extinction of the species is morally OK, so long as those alive are

benefitted. He was arguing from esoteric Group-Utilitarian arguments I

believe, and was quite sincere. Other than that I can't think of much

academic support for your position as stated or the idea of inviolable

" personal matters " , offhand - I wouldn't refer to Hume in this

context, for example - so I presume you aren't proceeding from

Philosophical grounds, or general ethical principles, such as

discussed by professional philosophers of ethics, but are referring to

societal agreements about what can be raised in informal groups,

particularly where the individuals don't know each other well.

We do often choose to wall off what is uncomfortable, or might cause a

few ruffles during dinner parties, as a matter of politeness, and

sometimes we refer what falls under such (changable) rules of thumb as

" personal matters " . But this doesn't mean they aren't ethical choices,

even the most important and dramatic of our ethical choices in life,

just that we don't want to deal with those issues in public, except

maybe during ethics seminars, because censorship is thought to lead to

more pleasantness. (But I might be so impolite as to remind you, that

similar censorship can also inhibit we sufferers telling others about

EDS or our symptoms, even when this is necessary to help us to avoid

pain or blame.)

Once upon a time society agreed that slavery was such a personal

choice, certainly most (white) Americans did. Not so long ago, whether

you (male since women weren't legally people, at least in Canada)

chose to hit your spouse or not (or cause pain to animals you owned)

was regarded as simply a personal matter by most, and society enforced

this rule of polite discourse. We would now agree that these choices

were still wrong, whether it was polite to raise a disagreement or

not. We cannot easily or trivially predict how a future society will

view us.

Such politesse is perhaps fine if there's no action that could be

taken. But times have changed, our tools and genetic knowledge are

growing enormously. Simply to sit back and refuse to raise such issues

because it's awkward can't wash anymore. They will be raised - and

even now laws are being passed affecting just such issues, especially

re insurance and eligibility for health care, for example. Those laws

will affect this group. Whether we wrestle with the ethics or not,

legislators will. So we probably should take them seriously as ethical

issues here, rather than be surprised when we open our newspapers to

find that they have made these " personal choices " for us.

Surely, of nothing with profound consequences for others could it be

said that " no individual choice is right or wrong " . Even post-modern

philosophers would back away from such a position, I believe I can

predict. We can agree to disagree (but that also means that we must

allow, and allow the expression of, real disagreement.) We can limit

the scope of legislation in such matters (as constitiutions usually

do.) But it would, by now, be unwise, I think, not to discuss such

matters, even using terms such as " right " and " wrong " , if only because

others are discussing them, and will act, without our input if we say

nothing or assume that things will always be the way they are now.

If nothing else, to dismiss the possibility of taking a position on

such matters dismisses whole religions out the box, and rules out as

false (because it does present a position) much of what they have to

say to us. Surely more tolerance of differences of opinion on these

important matters is needed than that.

I do understand the psychological reluctance to discuss - my own

decisions in life have slowly been informed by my slowing growing

understanding of this disease. Had I known more, earlier, my decisions

would have been different in many cases, I'm sure. Tomorrow, I may

realize that a decision I made today didn't sufficiently take into

account how my weakness might put others at risk, for example. But it

would not be moral to leave my acions and decisions unreviewed, and

perhaps blindly continue to be a risk factor for others.

Of course life holds surprises, we are not Gods, and our decisions do

not singly determine consequences. But, as the renowned anthropologist

Clifford Geertz once pithily wrote in reply to such an argument, " just

because there is no such thing as complete aesepsis (sterility) does

not mean that we should conduct surgery in sewers. " Whether we should

took large risks of adding to the pains and troubles of the world is

surely a serious matter, and not obviated by the possibility that we

might get lucky, or cound be otherwise unlucky anyway. None of us

would accept such an argument from a child of ours (and they certainly

do make such arguments!)

Again, I respect your right to your opinion, I merely hope that you

will also respect my right, also, to disagree with a blanket assertion

that nothing I could say apply, because I've mentioned right and wrong

and for reasons you've put forward and feel produce a valid argument,

it's not that sort of matter. Free speech must include the tolerance

of contradiction and the expression of disagreement, otherwise it is

merely the tyranny of those who speak first, or the tyranny of the

smallest claim, which would be a different thing.

[Guest guest]

> Again, I respect your right to your opinion, I merely hope that you

> will also respect my right, also, to disagree with a blanket assertion

> that nothing I could say apply, because I've mentioned right and wrong

> and for reasons you've put forward and feel produce a valid argument,

> it's not that sort of matter.

Everyone is entitled to their own position. Like you, I have chosen not to

reproduce because I don't want to have a child with EDS. However, I will

not judge others for making different choices. I do not believe that anyone

has the right to determine for another whether they should or should not

have children, regardless of whether they have EDS or not. You don't have

to agree with another's decision whether or not to have children. However,

as we all must respect the different opinions of others, so must we respect

their decisions, lifestyle choices, religions, etc. The strength of this

forum is in the support and respect of each other, regardless of our many

differences.

In the context of genetic ethics and advanced knowledge, may I point out

that the human genome project examined the ethical and social implications

(ELSI) of the growing availability of genetic information and genetic

testing. One of the many questions asked was whether or not people would

terminate a pregnancy, even late term pregnancy, if they were told the child

might have a defect. I participated in the ELSI research and was invited to

a conference 7 years ago to discuss the initial results. Most conference

attendees were shocked to learn that many people would terminate a pregnancy

due to a possibility of a birth defect. A possibility, not a certainty, of

a defect was enough.

Science fiction takes this response further in the movie Gattaca, in which a

person's genetic code determines his or her reproductive rights and

employment opportunities.

There is an interesting NPR segment on this ELSI research and the ethical

implications of prenatal genetic testing online at http://www.ornl.gov/TechR

esources/Human_Genome/medicine/genetest.html#more (Prenatal Testing: A

Modern Eugenics?)

The purpose of the list is support and sharing information. Differences in

opinion and choices are inevitable. I respect your choice, as it is the

same choice I have made for myself. At the same time, I respect the choices

of others. I hope that all list members will also respect the opinions and

choices of others.

-Barb

[Guest guest]

Well stated, Barb, and I agree! We need to have respect for everyone for who

they are and what they believe in. Usually if something really bothers me and I

know I can't change it, I just delete the post and say a prayer.

Love Lana

[Guest guest]

> I do not believe that anyone

> has the right to determine for another whether they should or should

not

> have children, regardless of whether they have EDS or not.

That's the core of our disagreement - whether future consequences to

children make it a public matter. And what I'm saying is that I don't

believe legislators are going to agree with you - especially given the

difficulties of Canadian medical systems, and other legislation I've

seen. You wouldn't believe some of the things they've already done to

save pennies - including giving doctors a monetary kick-backs for

prescribing fewer drugs and tests to their patients over the year than

other doctors, with no reference to need! If you believe this is a

purely personal matter, I think it would be wise to start organizing

politically now.

You don't have

> to agree with another's decision whether or not to have children.

However,

> as we all must respect the different opinions of others,

But this is to one side of the discussion - you can't mean that I can

only respect another's decision by never stating my own ethical

beliefs if they contradict those of others - and the big question here

is whether it's a personal matter at all, given that another, a future

child, is very much affected. Unless I misunderstand you, you seem

reluctant to allow disagreement at this meta-level.

I think there's a deep confusion here, that pervades society, between

what's not an ethical matter and what's too divisive to be decided

legally as yet. If that confusion leads any of us on this board to

believe that what we consider our " rights " will be respected, I think

we're going to be surprised, sooner of later.

Even now, a civil suit for damages by a child knowingly conceived by

EDS parents against those parents might very well succeed, (I think it

would) and I'd hate to think what the damages might amount to. I'm not

at all sure that our courts are going to respect this right to

reproduce regardless of known risks, or even that they do now respect

such claims of priviledge.

Russj

[Guest guest]

In a message dated 6/7/2003 10:07:47 PM Central Daylight Time,

pghand@... writes:

> I think that we are given things in life, some call them gifts, others call

> them curses - but whatever they are, they make us who we are period. What

> makes us human and able to tolerate and get to the next day is attitude,

> friends, family, a higher belief if that's your thing, and your desire for

> personal peace.

Wow, Jill, what a statement! I totally agree with it, and it was said so

beautifully. I will keep it for future re-reading if that's OK with you. You

are a very smart lady, one I admire a great deal and feel priviledged to know -

at least electronically (for now)!

Love Lana

[Guest guest]

This is a highly sensitive and potentially volatile issue that will always

separate people's beliefs and we should respect the differences in opinion

as a point of view worthy of respect and honour.

A good friend of mine had her first child when she was 27 years old and was

looking forward to the expected arrival. Pregnancy went well, no problems

or complications - but on the day the baby arrived, he presented with

profound Down's Syndrome. Her life completely changed as did her husbands -

fortunately, all for the better.

When I decided to have children, I knew I had EDS and knew the potential for

passing it along. We personally felt that at least we knew what we were

dealing with with EDS and didn't have to learn anything new - although this

was foolish to think because at any time genes can mutate, accidents can

happen and any one of our children could have ended up with something that

we could not have predicted.

I think that we are given things in life, some call them gifts, others call

them curses - but whatever they are, they make us who we are period. What

makes us human and able to tolerate and get to the next day is attitude,

friends, family, a higher belief if that's your thing, and your desire for

personal peace.

Jill

[Guest guest]

You flatter me Lana, thank you.

Jill

Re: Re: EDS...Fertility in Men and Women...seven month EDS

babies

In a message dated 6/7/2003 10:07:47 PM Central Daylight Time,

pghand@... writes:

> I think that we are given things in life, some call them gifts, others

call

> them curses - but whatever they are, they make us who we are period. What

> makes us human and able to tolerate and get to the next day is attitude,

> friends, family, a higher belief if that's your thing, and your desire for

> personal peace.

Wow, Jill, what a statement! I totally agree with it, and it was said so

beautifully. I will keep it for future re-reading if that's OK with you.

You

are a very smart lady, one I admire a great deal and feel priviledged to

know -

at least electronically (for now)!

Love Lana

[Guest guest]

wrote:

" The only child I am sure shows no signs of EDS is adopted "

Ooooops! I thought your adopted child has EDS, I know now it was the

one you were trying to adopt. Your comments are well said. Even if you did

not have EDS you could still have had an EDS child or whatever. So like

you, I feel it is not what is going on with us that define us, it is what we

do with it that define us. And now I am being to understand that definition

changes constantly as one ages. So, like in the Star Trek Next Generation,

if Jordie did not have his blindness they would not be able to stop that

world from being destroyed, and Hitler would have his Golden Children. I do

not think anyone on this list would sue their parents for having them. I

doubt it would hold up in court anyway as one cannot control the passing of

genes without technological interference. Technological interference costs

are prohibitive. So fear not if your children sue you for their EDS be sure

it is more about your relationship with them rather than the EDS.

Love Whole Bunches of The Lottery of Genes, Carole

[Guest guest]

Actually, I'm certain to change mine. Things are going to look very

different for all of us once diagnostic chips that can easily screen

for a multitude of genetic conditions exist, whole DNA scanning may

become possible, the prospects of genetic therapy increase,

legislators make their decisions and judges theirs, and all these

issues become more concrete. I'm sure everything will look different

once we are further into that brave new world.

> You are, of course, entitled to your opinion. I respect your right

to have

> your opinion and to state it publicly. I will not debate the issue

with you

> on the list further as it is obvious that we disagree and are not

likely to

> change our minds.

[Guest guest]

I've been quite surprised, over the last few decades, by the number of

issues that didn't need to be resolved, or were counted as necessary

freedoms, that are now gone or legislated away. What counted as

private a few decades ago (remember when they said our Social

Insurance Numbers would be very private, never used by employers?) has

been legislated away or gone whatever way private business thought

best. From the lack of internet privacy, to constant camera

surveillance, to the Patriot Act, etc...

If this can't be addressed in this forum, if there can be nothing like

a concensus here, I greatly fear that legislation will be passed by

taxpayers whose concern will be reducing possible public health care

expenses, period. I'm afraid they may be able to find a concensus, and

that neither you nor I will like that concensus, or be able to budge

it once it becomes law.

I like talk of flowers, sharing and caring, but I haven't heard much

of it from political parties in my neck of the woods. Wish I had.

> This has been sitting in my 'outbox' for a few days.

>

> I think this is a subject so frought with emotion and opinion, all

> important, individual, and valuable..that it can't be addressed in

this

> format.

>

> Jean