Toi te Taiao: the Bioethics Council pre-birth testing online deliberation

Transcript for Deliberation Group 1 - closed 5 December, 2007

Welcome
commentSam:11/15/2007 09:06 AM NZST
Welcome to this deliberation on pre-birth testing. I’m looking forward to getting to know you all as we explore the different approaches and work towards what you as a group would recommend to government.

Toi te Taiao: the Bioethics Council was set up to develop advice to government on issues raised by biotechnologies through dialogue with the public. For the ‘Who gets born?’ project, the Council has chosen a form of deliberative dialogue because it allows ‘normal’ people to bring their knowledge and experiences to the public policy-making table. The Council will report what comes out of the on-line and in-person deliberations to government in early 2008.

THIS ON-LINE DELIBERATION
We will use the same process as in the in-person events. My role is to act as a neutral process moderator. I will ask you questions, summarise what’s been written, and keep us to time. Your role is to explore the issue with your colleagues by ‘listening’ and probing the views of others. I also expect that you will find yourself reflecting on your own values, views and assumptions, and sharing your knowledge and judgement.

For this deliberation, I’d like to suggest the following the ground rules:
1. Keep a collaborative, open-minded approach – consider and respect others’ experiences, views and values.
2. Try to post at least once a day – I’ll write daily summaries of what’s been said.
3. This is an inquiry, not a debate. It’s not about winning but about developing your understanding.
4. Disagree with other people’s ideas, not the person.
5. Write short, focused posts. Limit your comments to the topic.
6. Have some fun, try putting yourselves in the shoes of others and don’t worry about mistakes.

TIMELINE
You should all have completed the choicebook. Over the next 3 days, I’d like to you to try out this new forum and share your initial thoughts about pre-birth testing and the framing set out in the choicebook.

From 18 Nov, we’ll spend about 8 days working more systematically through each of the 4 approaches.

From 26 Nov, we’ll look for some common ground and work towards the group’s recommendations. We plan to end the forum on 29 Nov.

SO LET'S START!
I’d like to hear your initial thoughts about pre-birth testing and the framing set out in the choicebook. You might also like to comment on the ground rules or ask about the Council, this project and the process we will be using.

Questioning the idea of the science
commentBrett:11/15/2007 12:21 PM NZST
I need to make it clear I am not a luddite (although I admire old Ned Ludd!) and nor do I want to good to the not-so-good-old-days before science and technology, but I do want to question what seems to me to be deeply implied in this discussion and other Bioethics Council discussions of which I have a part.

The idea is that science and the progress of science and the technology that comes from it always benefit humans. This is a 19th century point-of-view that I think has to be openly and knowingly confronted. To be fair I think that the scientific world is much more open to being questioned than it was. But because a technology is possible does not mean, IMO, that it has to be developed and used. The expression "Well, you have to have progress" is not true anymore.

There is and always will be a tension (and rightly so) between those who have a need for a certain technology and the much more impersonal making of policy. Someone who has a beloved daughter who is dying or suffering may well want a "saviour sibling" to help their child, but that doesn't remove the ethical issues.

Much of our medical technology is used to relieve suffering of many kinds, our own suffering of that of those we love, but I am not sure that we actually want all suffering to vanish from the world.

Brett

RE:Questioning the idea of the science
replySam:11/15/2007 12:39 PM NZST
Welcome Brett, your comment is most welcome! Not only am I relieved that the forum seems to be working but you raise important, underlying questions. I think the political act of creating the Bioethics Council back in 2002, after the Royal Commission on Genetic Modification, came out of more open questioning about the benefits/costs of 'progress' and questions about policy making processes. I look forward to hearing more ...

Hi group
commentnicci:11/15/2007 01:31 PM NZST
Just introducing myself to Sam, Brett and the rest of the group. My name is Nicci - same as my username. I am interested in this issue and have chosen to participate in the online dialogue because I cannot attend the facetoface one due to not being able to leave my children. I'm interested in this from a parent's perspective - as someone who faced genetic issues and had to make decisions about taking or not taking tests and the consequences if we did/didn't. I'd like to hear from others why this issue interests them an any personal experiences they have had? Look forward to the future discussion.

Intro
commentN:11/15/2007 02:09 PM NZST
Hi to Nicci, Brett, Sam and others. I am an ethics student and tutor (although bioethics is not an area of ethics I have studied), and I also have a personal interest in this topic, as a prospective parent.
N.

Re; Introduction.
commentBen'80:11/15/2007 03:33 PM NZST
Hi everyone, first off I have to say that I’ve really been looking forward to this discussion.

I work for the government as a policy analyst, and through my job have been introduced to the whole field of pre-birth testing. However I’m here to participate and discuss with MY opinion and MY views. My work won’t be getting anything out of this and anything I talk about or offer here doesn’t reflect on them at all.

Hopefully people won’t treat me with too much distrust - I’m not a bureaucrat and I don’t live or work in an ivory tower :). Just thought I’d be useful to get that out in the open so that no-one gets offended or angry with me if they figure it out later.

So with that out of the way… There’s some massive and controversial issues sown up within pre-birth testing that I’m really looking forward to discussing and seeing what other people’s views are as well as, to be honest, discovering what my opinion actually is.

I don’t really have a concrete opinion in a lot of this area. Concerns Yes, but also some real hopes for future generations. I’m in my mid-late 20s, I want to have kids soon(ish). What’s the landscape going to be like in 5-10 years time?

Oh and a thought about text base communication. I’ve used a lot of message boards over the years, and one theme always comes through - text is a lousy at communicating tone of speech. So try not to get angry when people write stuff that you interpret as offensive. Chances are they didn’t mean it in that way :)

RE:Re; Introduction.
replySam:11/15/2007 05:09 PM NZST
Good to meet you Nicci, N and Ben'80 and find out little bit about you - your experiences, your current situation and your hopes for the future - and your motivations for taking part in this.

And thanks, Ben'80, for raising one of the problems with the online environment - without that body language, it's easy to misinterpret posts. Since a theme for this forum is inquiry, I'd encourage you to query something rather than take offense.

Hi again
commentnicci:11/15/2007 06:35 PM NZST
I guess to broaden myself out amongst such qualified companions, I should mention a science background (BSc) and a law background (still studying) - which will inform my participation - I've thought quite a bit about the right to life debate - and the status of the current law (which generally speaking can be summarised as no child has rights until they are born alive - aka the 'born alive' rule.) I'm not sure what my view is - it seems a harsh rule in some cases and can cause injustice, but on the other hand if we move away from that rule, is there really a better alternative. That's something I'll be thinking about as we discuss. Back tomorrow.

Hello
commentJonathan:11/15/2007 09:58 PM NZST
Hi all,

Unfortunately it turns out I will be away for the majority of the time of this forum. However, I do have some thoughts on this important topic. Firstly a bit of background. I am 27 and am a paraplegic confined to a wheelchair and have been since birth.

Having completed the choice book I find myself agreeing with approaches one (individual rights) and also the approach regarding the provision of information. The decision to keep a child or not, in my view, is intensely personal and should be one made by the family concerned without any external pressure. At the same time it is important that people faced with whether or not to keep a child who may have a disability of some kind should be provided with adequate information to allow the parents concerned to make an informed decision.

What were your initial reactions to the framing?
questionSam:11/15/2007 10:08 PM NZST
Thanks Nicci, I sense you're itching to dive in. That’s great but … perhaps it's a good a time to outline more of the process.

What we're hoping to do is move from first reactions and opinions towards a shared sense of what is valuable to different people and what the costs/consequences of each approach might be. Once you can individually make the best case for your least favoured approach and identify the 'negative' effects of your most favour option, we'll be in a good position to search for common ground from which to make recommendations. We’ll start working towards recommendations on 26 Nov. Before then, from 18 Nov, we’ll work systematically through each of the 4 approaches. It's during this time that we'll look at, for example, the rights of the embryo/foetus. We'll do this when we look at Approach 2.

For the moment, however, I’d us to focus on how you felt while working through the choicebook. What did you find surprising? What has been missed? We’ll also continue with introductions – we’re expecting another ten or so people to arrive soon.

Tip: I find it useful to have a copy of the choicebook handy. A paper version of the on-line version is available from this website. Alternatively email me with your postal address if you'd like the formal publication called "Who gets born? Pre-birth testing choicebook"

RE:Hello
replySam:11/15/2007 11:40 PM NZST
Good to hear from you Jonathan. If you have access to the internet while you're away, you will be able to log in. I hope you can.

Hello everyone
commentKelly:11/16/2007 08:51 AM NZST
I there. My name is Kelly and I participated in the initial pre-birth 'in person' forum. I too need to be at home with my children, so this on-line choice just fits into my life very nicely. I am registered nurse (critical care specialised), and also a mother of three children (one of whom has an extremely rare genetic disorder). So as you can imagine, this topic is quite near and dear to my heart. I have friends who have been through genetic counselling, and friends who also have a child with a profound disability. So I guess I will be sharing a lot of my personal experiences, along with perspectives from a health professional. I really look forward to reading and contributing.

reaction to choicebook
commentBen'80:11/16/2007 01:23 PM NZST
Kia Ora Kelly!

My initial reaction to the choice book? Frustration.

It made me actually choose stuff - which was hard when I didn't agree with everything from a set approach.

But, in retrospect, it was very well constructed. There were bits that I wanted to pull together from each approach to make a best fit of what I believed in.

I really enjoyed the having to assign funding to my ‘favourite’ part of each approach. It made me evaluate some of the approaches that I would’ve likely dismissed at first glance, and see the good parts from them.

I also found the little side bars like the “warrior gene research” and the comments on genetic testing for homosexuality interesting and they made me think about possible future ramifications for pre-birth testing.

Lookin forward to getting into the discussions more in the coming days.

Intro & Apology
commentJoanne:11/16/2007 03:02 PM NZST
Hi, just introducing myself. I'm interested in this mainly through my work as an academic in the bioethics area. I'm glad to see this has started up, but I wish it had been earlier, because I go on maternity leave in just a week. I will have to try to check this from home too.

Aside from the academic perspective, I think I bring an interesting one with being pregnant at present. In response to Nicci's comment, at 37 weeks pregnant the "born alive" rule seems a little ridiculous - baby could come this week or in a month, and it's hard to see how being 'inside' or 'outside' changes who the baby is in terms of his/her moral status. Throughout this pregnancy I've been able to think through some of the pre-birth issues from a more personal perspective. For example, we decided against a nuchal translucency test for Downs, but I wonder if that would have been different had I been a lot older. Hmmm...

Anyway, I quite enjoyed the choicebook. It was a good way to frame the issues. I certainly found myself backing the provision of information and personal choice, but with some regulatory limits on that.

I look forward to reading everyone's thoughts.

Ooops!
commentBrett:11/16/2007 03:47 PM NZST
I should have introduced myself too! I've sorta kicked around the world a bit, done a fair few different jobs in one or two different countries. The largest part of my working life was spent with severely abused children (about fifteen years) and another junk working with computers because I thought it would be less stressful. [Pause for ironic laughter].

I'm pretty much retired these days. I'm also looking forward to the discussion.

RE:What were your initial reactions to the framing?
replyBrett:11/16/2007 03:59 PM NZST
Like others I found the choicebook a mixture of a challenge and a frustration. I found myself answering "Don't know" much more often than I wanted because sometimes none of the options reflected what I thought and occasionally because they were "double-barrelled" questions; there were two questions bound together but looking like one.

But mostly I enjoyed the process and I learned somethings as I went, which is great!

Oh yes, PS, I hate emoticons >8-[ ]!

Getting to know each other
summarySam:11/16/2007 04:01 PM NZST
Brett, Nicci, N, Ben’80, Jonathan, Kelly and Joanne have come to the ‘table’ and there’s an obvious sense of anticipation. For example, Ben’80 is looking forward to discovering his own opinion by engaging with others.

We’re currently getting to know each other and sharing our initial thoughts on pre-birth testing and our reactions to the framing. However, on Sunday 18 November, we’ll start exploring Approach 1 in detail.

WHAT HAVE WE HEARD SO FAR?
We know there’s a wealth of experience, passion and expertise around the table. So far we have people who have lived with disability and genetic issues, parents, prospective parents, a student, an academic, health and policy professionals, and someone who has worked with abused children and computers.

Brett has raised questions about the idea of ‘progress’ and about how we make decisions about developing and using technologies. He has also wondered about the relationship between suffering and being human, and noted the tension between people who want/need a technology and public policy making. Nicci and Joanne have queried the current legal status of unborn children. Ben’80 has been wondering how pre-birth testing will develop and found it difficult to decide on his preferred approach to pre-birth testing. After working though the choice book, Jonathan and Joanne think that the best policy position is ‘informed choice’.

WHERE WE’RE GOING
As we engage each other and work through each of the approaches, we are hoping to move from first reactions and opinions towards a shared sense of what is valuable to different people in our society and what the costs/consequences of each approach might be. Once we’re done that, we’ll be in a good position to search for enough common ground to make collective recommendations.

WELL THAT’S THE THEORY!

Hi again....
commentKelly:11/16/2007 04:43 PM NZST
Sorry guys, forgot to say that I will be away from Monday to Wednesday next week on my daughter's school camp. I will keep up though and read everyone's thoughts and comments (as I too have many around this subject).

The choicebook for me at times was difficult also. I felt a little uncomfortable with having to 'tick a box' for my responses. That's probably because I am a talker and like to explain myself more fully. And this forum will be ideal to do that. Pre-birth issues are so emotive aren't they? And even though we all have varying backgrounds, we all seem to share that uneasiness around this subject. But I guess as time goes on, my personal beliefs will come through and I'll be sure to share this with you all. And what an amazing and diverse group we are!

If you get behind ...
commentSam:11/16/2007 05:00 PM NZST
Kelly

Thanks for letting us know you'll be away for a few days - enjoy the camp.

And thanks for sharing your reflections on the choicebook. Reactions so far include frustration, interesting, good to be force to make choices, some questions too complex and options too limited, thought provoking ...

TIP: If you do get behind, one way to quickly 'catch up' is to view by 'Moderator Summaries' - see the pull down in the top righthand corner.

Ditto re choicebook.
commentnicci:11/17/2007 05:22 PM NZST
I had same or similar reactions - a bit of frustration that I couldn't express 'my view' and that I had to make choices which then made me think more about where 'my view' was on the range - basically, it made me ask a lot more questions.

Reactions to the choicebook
summarySam:11/18/2007 09:00 AM NZST
Thanks for your thoughts about the choicebook. Reactions were mixed – interesting, enjoyable and thought/question provoking but frustrating as well. Some of the questions were really several questions crammed into one. One person noted that he was marking “don’t know” more often than he would like. Some people found the options to restricting or wanted to explain their positions for freely – so welcome to the forum. A number noted that it was difficult to choice responses and felt there was some value in being ‘forced’ to do so. We’ll be doing more “choicework” soon …

LET’S CONSIDER APPROACH 1 – “MY CHOICE, MY APPROACH”
questionSam:11/18/2007 09:06 AM NZST
LET’S CONSIDER APPROACH 1 – “MY CHOICE, MY APPROACH”
It’s time to start working our way though each of the approaches in turn. We’ll do this over the next 8 days or so. That’s 2 days for “My Choice, My Right”, “Life is a Gift”, “Tangata Whenua Perspective” and “Knowledge is Power”. Over the last 3 days, we should be in a good position to search for common ground and identify the actions we would collectively recommend to government if we can appreciate:
* what people who support each approach find valuable about it
* what its costs and consequences might be

As we work through each approach, I will ask you questions to help us appreciate, firstly, what is valuable and then the consequences. We’re trying to get beneath clichés to the underlying values and beliefs. Enquiring in this very systematic way may not be to everyone’s liking but should help us to consider each approach consistently and thoroughly.

During this process, you will probably be asked to find something valuable about an approach you strongly disagree with or the costs of a favoured approach. When faced with this, I would invite you to make the most of your relative anonymity and playfully put yourselves in the shoes of people with different views from yourself. This may be extremely challenging but is what deliberation is all about.

FIRST QUESTIONS
People who support this approach say that mothers/parents should be able to make their own decisions about reproduction.

Our aim is to collectively increase our shared understanding of this approach. Feel free to explore with the group by asking questions and sharing your understandings. Once we’re had a go at the following questions about what valuable about this approach, I’ll ask you about the costs and consequences, and some of the tensions or conflicts that are emerging for you.

But for the moment:
* What things are most valuable to people who support this approach?
* What experiences and understandings might be important for someone who favours this approach?

RE:LET’S CONSIDER APPROACH 1 – “MY CHOICE, MY APPROACH”
replyJonathan:11/18/2007 10:08 AM NZST
Hello,

As I mentioned in my previous post, I have been a paraplegic since birth. The reason why I support approach one is that I believe that parents are in the best position to judge for themselves whether or not they are in a position to be able to manage with a child with some form of disability or illness, after all it is the family who are left with the consequences of their decision. However, there are downsides to this approach as well, there is a risk that parents put themselves first and decide simply on a whim not to proceed because it is easier and they would rather not have the hassle which could result in children with disabilities been denied the chance of having a go at life. At its most extreme, a situation could arise where people with disabilities are weaned out of society through the use of this technology commonly known as eugenics. As I say, this is extreme but I think it should be kept in mind. As I also mentioned in my initial post I am going away and therefore I won't be able to participate later. With this in mind I also support approach four. When parents make a decision as to whether or not they keep a baby who has a disability or illness, they must have all the options put in front of them so they make a decision based on sound information.

RE:LET’S CONSIDER APPROACH 1 – “MY CHOICE, MY APPROACH”
replyKelly:11/18/2007 04:14 PM NZST
Hi everyone - Kelly here. Jonathon raises some important considerations, and I agree with him. Raising an individual with a disability or medical condition can be at times very overwhelming, but equally can be the most incredible experience you'll ever encounter. The most valuable things in this approach I feel is to be in control of your own life, to be able to make decisions that directly impact on you - but in order to do this you need full information. Experiences that are important for this approach, might be knowing of others raising children with 'difference' and understanding the costs to yourself may be too high. And let's face it, the parents of the unborn child will be the ones who ultimately care and raise the child - nobody willingly helps out my friend with her daughter who has a profound disability! And how sad is that? The flipside to this, is that as Jonathon says we will end up denying individuals of 'difference' to be born. But how many parents are told 'yay, you are going to be giving birth to a child with multiple challenges?' I am worried that we will become less 'educated' on life lessons. What do you think?

RE:LET’S CONSIDER APPROACH 1 – “MY CHOICE, MY APPROACH”
replyJonathan:11/18/2007 06:52 PM NZST
Hi all,

This will probably be my last post as I will spend the next two days travelling from Christchurch to Auckland, before leaving for Fiji Wednesday afternoon/evening. I just want to encapsulate my thoughts, apologies if it seems I am repeating myself As I have said in my last two posts, it important to realise that it is the parents of a disabled child who have to deal with the issues on a daily basis and as no doubt some of you know, the issues and the challenges can be huge. Because of that the parents must be at the centre of any decision.

Secondly, so that parents can make the best choice both for themselves and the child, it is vital that parents are given full information on all of the options available. Although the medical professionals concerned may be under some pressure from the parents to tell them what to do, it is important that although the professionals can advise, the final choice must always be that of the parents. It is the parents who have to live with the consequences of their decisions.

Hope the rest of the discussion goes well, if I can log in at some point over the next week or so I will.

What things are most valuable to people who support Approach 1?
commentSam:11/18/2007 11:05 PM NZST
Thanks indeed, Jonathan and Kelly, for your posts today. I can certainly see that a supporter of approach 1 would value:
* being in control of your own life
* the person/people who bears the consequences of a decision making the decision

I'm not so sure a supporter of this approach would necessarily value being provided with the 'right' information. We will cetainly examine the need for information when we look at Approach 4.

Later tomorrow we'll examine the costs and consequences of Approach 1 but until then, what other things are valuable to a person who supports the "My Right, My Choice" Approach? What would they find appealing about this approach?

RE:LET’S CONSIDER APPROACH 1 – “MY CHOICE, MY APPROACH”
replySam:11/18/2007 11:08 PM NZST
Bon voyage, Jonathan. Have a great holiday and I hope you manage to stay in touch with us during the remainder of this forum. Thanks for your participation (so far ...)

RE:What things are most valuable to people who support Approach 1?
replyKelly:11/19/2007 08:01 AM NZST
Yes I understand what you're saying Sam regarding a supporter of this approach not valuing the 'right' information. I guess it all comes down the emotiveness of being pregnant and having to make an enormous decision - that really you don't know the outcome of. And as many people are not aware of, if you are carrying a child with a genetic disorder or medical condition, there is a wide spectrum to which the child will be affected (i.e. either mildly or severe). Very tricky. However, I do believe that if the information is given appropriately to the woman and her partner (with all perspectives) then we're on our way to a more informed decision.

RE:What things are most valuable to people who support Approach 1?
replySam:11/19/2007 09:33 AM NZST
Good morning Kelly. You're raising a good point - an 'Approach 1' type person might not value being told what information they need to make their decision. As a consequence, these people may not make what other people consider to be 'informed' decisions.

Jonathan raised another possible consequence of Approach 1 - eugenics. Let's pick up on these and other consequences shortly, when we've had a little more time to think about what's valuable about Approach 1.

RE:LET’S CONSIDER APPROACH 1 – “MY CHOICE, MY APPROACH”
replyBrett:11/19/2007 10:03 AM NZST
Even at this apparently surface level this is such a complex question. The more I think about it, the more complex it becomes. Anyway let me try and think my way into this ...

I think I agree that parents must have reproductive choice, that how their bodies are "used" is up to them. They should be able to decide whether to have children or not and when to have them or not. But what seems to be left out is the child. Does the child have a choice? What on earth does that mean? If the child does have a choice in some way (and I think it does) then as the child cannot speak for itself who will speak for it? And how do you speak honestly for an unborn child? So yes, I agree that parents must have the choice, it is their life, but it is also the life of the child, isn't it?

As medical technology becomes more and more sophisticated the capacity of parents to be "in charge" increases dramatically. It is not just the relatively simple choice of do I want a child at this point in my life, but what gender will the child be, what diseases are possibly present etc etc. Suddenly it seems to me that there is a serious danger that children slip out of the realm of the human and into the realm of products to be consumed. Just a moment while I look through this bottle of children ... yes! I'll have this one ... no! maybe not blue eyes we had blues eyes last time ... but intelligent and tall would be nice. Yes, I'm being fanciful, you get the point.

As I have said I spent a large piece of my life with children who were beaten and unwanted, but what a joy they were and how much they taught me. The thought of a world without them is heart breaking. But there is also great suffering there ...

Brett

My choice, my approach.
commentnicci:11/19/2007 10:50 AM NZST
What a person supporting this approach would value would be the freedom to make any choice they want. This is also a burden! Sometimes you want someone (anyone) to make a hard decision for you. It also seems to be based on a perception that they will make the 'right' decision for them, in the long run.

But really there is no 'right' decision in these areas, I believe. In Approach 4(?) when we look at information, we can think about how much information people could have to make these decisions, but I want to point out (as already alluded to) that often such information simply doesn't exist. We couldn't get any further information for my pregnancy without putting the children (I have twins) at risk. Because I had twins, the results of one could mask or distort the other. There simply wasn't anything anyone could do, except amnio them both and I refused that because of the risk of miscarriage.

Jonathon's earlier comment about a society weeding out disabled people pre-birth is also something I'm not sure is realistic (I don't wish to offend you Jonathon, just express my view). I knew no-one with disabled children - so my own personal society was disabled-people free - yet I was prepared to have one, if not two, disabled children rather than none. But I fully agree with your key point - it was my choice to make that decision. I'm just now sure how much society pressure really does infiltrate into such a personal choice - but I guess it is hard to say one way or another because of the subtle and variable factors that influence our decision-making.

I'd also like to make second comment about a person's right to have children and how this might lead to 'consumer commodity' children. I accept the key point you're making. But can I point out that current research shows women's fertility now declining from late 20's! I doubt children will ever become a consumer commodity. It's just too damn difficult to control the millions of variables.

RE:My choice, my approach.
replyBrett:11/19/2007 03:02 PM NZST
Good thoughts Nicci!

I agree there will never be any "right" answer in most of these situations. MY wife and I had a very late pregnancy and did various tests and the child was stillborn. I doubt that the tests were responsible for that but still I carry that doubt. And the truth is that no-one knows.

I also agree that "It's just too damn difficult to control the millions of variables" but I don't think that the concerns can be dismissed because of that.

And as an aside it is not only the fertility of women that is falling. A recent study repeated a study done in the 1950s on college freshmen in the USA. The sperm levels of the men in the recent study were 80% down on the equivalent men in the 1950s. Scary!

Summary: What things are most valuable to people who support Approach 1?
summarySam:11/19/2007 04:11 PM NZST
Thanks Jonathan, Kelly, Nicci and Brett for grappling with the initial questions on what supporters of Approach 1 would find valuable. My summary so far is that a supporter of approach 1 would value:
* being in control of your own life
* the person/people who bears the consequences of a decision making the decision
* the mother (parents) must have reproductive choice as it’s the ‘use’ of her body
* the freedom to choose whatever they like

A number of costs/consequences have also emerged:
* the possibility of eugenics
* this approach does not give the unborn child a ‘say’ in the decision or address how the child’s ‘voice’ could be represented
* an Approach 1 policy and new technologies may change our conception (no pun intended) of having children and children. Children may become commodities rather than humans
* some people do not want to make such hard choices and would prefer someone else (anybody) to do it for them

If you think of any other things an Approach 1 person might value, please let us all know!

Question: What would result from doing what Approach 1 proposes?
questionSam:11/19/2007 04:13 PM NZST
I’d like us to turn our attention to the costs and consequences of a “my choice, my right” approach.

Before you do that I’d like you to review the actions for this approach set out in the choicebook:
* remove all restrictions on PGD
* let mothers/parents decide whether or not to use IVF with PGD in order to select any embryo they wish to transfer to become pregnant
* let mothers/parents decide whether or not to have screening and testing during pregnancy
* let mothers/parents decide whether or not to continue or terminate a pregnancy
* require people to pay for any testing themselves

This is not an exhaustive list of all the possible actions to do with pre-birth testing that fit with the concepts of personal responsibility, freedom of choice and allowing mothers/parents to make their own decisions about reproduction, so I’d invite you to tell us if you think there are other actions a person supporting Approach 1 would recommend. While thinking about this, you may think of other things an Approach 1 person would value. Please share these thoughts and feel free to explore these further.

But mainly, I’d like to hear about what you think would result from doing what this approach proposes. What could be some of the consequences of the proposed actions?

RE:LET’S CONSIDER APPROACH 1 – “MY CHOICE, MY APPROACH”
replySam:11/19/2007 04:19 PM NZST
Brett, I think it's great that you've reminded us of one of the contexts for this deliberation - in the (near) future there'll be new tests, new possibilities, new social uses and new social understandings about reproduction, what it is to be human, etc. Let's keep this in mind as we work through the approaches. Some would say we're helping 'creating' that future by communicating as we are!

RE:My choice, my approach.
replynicci:11/20/2007 09:33 AM NZST
Brett, I'm sorry to hear you and your wife lost a beautiful child. The lack of a concrete reason and the forever unanswered questions is one of the harder things to grapple with alongside your grief at your loss.

RE:My choice, my approach.
replynicci:11/20/2007 09:37 AM NZST
Sorry, I'm not wanting to be dismissive of those who have raised concerns about forms of eugenics. I accept that the way my comment was written it did sound dismissive, and I apologise. I wanted to raise the general point that we shouldn't ban [ good thing ] because of fear of [ bad consequence ]. Of course, the best way to bring in anything which has a potential for bad consequences is exactly the sort of discussion and consensus building we're trying, and it can be useful to raise a hypothetical bad consequence in order to test ideas against.

RE:My choice, my approach.
replyBrett:11/20/2007 01:03 PM NZST
Thanks Nicci. It was along time ago now, more than twenty years. But she is still with us in the most wonderful way. Amazing!

RE:Question: What would result from doing what Approach 1 proposes?
replyBrett:11/20/2007 01:26 PM NZST
This is the libertarian point-of-view, that "the least government is the best government." The next step is anarchy, which has some interesting things in it's favour :)

As always it depends on the good will of those taking part in the community, and the basis of goodwill is trust. Everything that is worthwhile in this world is based in trust. All long term relationships are based in trust.

If all restrictions are removed, although most will be respectful, the renegades will take advantage of the lack of control. It has always been so. And then the balancing act begins between the freedoms of the individual and government regulation. It becomes, as always, and exercise in line-drawing.

It also not just individuals but business that move into an unregulated space. We have had a lot of examples in NZ over the last twenty years: airlines, railways, phone companies. power companies etc etc. The medical technology companies, Big Pharma in particular do not have an attractive record in this area.

So it boils down to keeping under control the possibly very aggressive behaviour of both business and individuals and balancing that against the rights of individuals to live their lives as they wish. Always rights and obligations are in balancing act. The difference between them being that of ownership. The rights of individuals are owned by the individual, the obligations of the individual to the state (or what or who ever) are owned by the state.

This forum software
commentBrett:11/20/2007 01:31 PM NZST
I would like to have a gripe about the software that is being used for this forum.

It does not allow me to quote Nicci, say, inside my message as almost all other forum software does.
It does not allow me to change the subject of the post and quote as well.
It does not thread posts at all.
I am forced to pick an emoticon each time I post. How silly is that?

These shortcomings are making it very confusing sometimes. There is so much good software out there, most of it freeware or opensouce. It's a pity we had to get stuck with this one.

RE:This forum software
replynicci:11/20/2007 02:42 PM NZST
Mmm, I find the lack of being able to thread post (to me that means I can connect my reply under the post it belongs with so you can logically follow the thread of one particular issue or development) frustrating as well. And it does seem somewhat simplistic to have to be either ok, happy, confused, thinking, sad or surprised. I didn't realise that we had run out of so many emotions in the world that we only had those one left! I do find the forum easy to use though, which is good.

My Choice My right - thoughts.
commentnicci:11/20/2007 02:59 PM NZST
Here's a gut reaction to where I stand on the options:

* remove all restrictions on PGD
No. Why? I'm concerned it would become a technique primarily available to the wealthy to (mis)use. I think it must be used squarely in the context of advancing medical understanding. I think it isn't focusing on the bigger issue too - once you have PGD, then what? What do you do with the results of the tests? Throwing it open to allcomers will minimise the benefits and maximise the harms that are associated with this technique.

* let mothers/parents decide whether or not to use IVF with PGD in order to select any embryo they wish to transfer to become pregnant
Yes, but with limits. I don't think first-time IVF users need it if there is no genetic illness history. But those with a history of failed IVF or miscarriage should be able to access it in order to eliminate the embryo as the cause of the repeated failures. Essentially this fits in with my point above - that it should be used in a medical context. Here, I think the criteria should be an unexplained failed IVF or IVF pregnancy.

* let mothers/parents decide whether or not to have screening and testing during pregnancy
Yes, depending on what "screening and testing" mean and supported with appropriate information about the consequences of the choices.

* let mothers/parents decide whether or not to continue or terminate a pregnancy
Yes. I'm assuming this is in the current legal context (ie. only early stage pregnancies are legally able to be terminated).

* require people to pay for any testing themselves
No, but those who are excluded from any public funding should be able to offer to pay for tests privately if they wish.

So there's my first thoughts. Don't shoot me if I change my mind later!

CLOSING SUMMARY FOR APPROACH 1 – MY CHOICE, MY RIGHT
summarySam:11/20/2007 11:15 PM NZST
A SUPPORTER OF APPROACH 1 WOULD VALUE:
* being in control of your own life
* the person/people who bears the consequences of a decision making the decision
* the mother (parents) must have reproductive choice as it’s the ‘use’ of her body
* the freedom to choose whatever they like
* less government is good

A NUMBER OF COSTS/CONSEQUENCES HAVE ALSO EMERGED:
* has no provisions to help mothers parents make 'informed' decisions
* the possibility of eugenics due to societal pressure to abort ‘non-normal’ foetuses
* this approach does not give the unborn child a ‘say’ in the decision or address how the child’s ‘voice’ could be represented
* an Approach 1 policy and new technologies may change our conception (no pun intended) of having children and children. Children may become more like commodities than ‘humans’
* some people do not want to make such hard, emotional, complex decisions/choices and would prefer someone else (anybody else) to do make them for them
* too little government control could lead to anarchy
* too little government control would lead to some individuals/companies acting unethically/trampling on the less powerful to maximise profit/power
* High tech testing (e.g. PGD) would mostly be used only by the wealthy
* Some testing would be used for non-medical purposes

SOME TENSIONS AND CONFLICTS
* Would societal pressure really cause disabled people to be weeded out of the population (eugenics)? Could societal pressure influence enough private, personal decisions
* With declining fertility rates, won’t children become more valued socially rather than technologically produced commodities.
* With new tests or more testing there will be more information and complexity, and the decisions will get harder to make.
* if you regulate, how do you determine where to draw the lines
* regulation of abortion

LET’S CONSIDER APPROACH 4: KNOWLEDGE IS POWER
questionSam:11/20/2007 11:52 PM NZST
We’re still on roughly track to work through each of the approaches and still have time for the really fun bit – searching for common ground and collective recommendations. Many people who have worked through this process find this stage the most rewarding. We will have to speed up a little though …

My sense is you’re pretty much in the groove of looking at what is valuable about an approach for supporters and what the costs and consequences might be. I’ve also started a running list of Tensions and Conflicts (see Closing summary for Approach 1 above). We'll add to that as we progress. We’ll aim work though some of these by the end of the forum

As a number of you think that Approach 1 needs Approach 4 so that decisions can be ‘informed’, let’s now turn our attention to Approach 4: “Knowledge is Power”. Approach 4 says that better information about pre-birth testing must be more widely available and in more accessible forms.

As when we considered Approach 1, we’re aiming to appreciate:
* what people who support this approach find valuable about it
* what its costs and consequences of this approach might be

I’d be happy for you to simultaneously address what’s valuable and the costs/consequences. That said, my experience is that many people seem to find it easier to focus on the costs/consequences that on what other people think is valuable …

*What things are most valuable to people who support this approach? What experiences and understandings might be important for someone who favours this approach?

* What would result from doing what this approach proposes?

Is anybody else out there?
ideanicci:11/21/2007 09:46 AM NZST
Scrolling through the list of particpants, I see there are names such as Ginty, Te Ara, Amy and Marilyn - have we got any silent participants who would like to introduce themselves?

RE:LET’S CONSIDER APPROACH 4: KNOWLEDGE IS POWER
replyBrett:11/21/2007 02:11 PM NZST
My apologies, I am flat out today and I won't have a chance to post until late tonight or maybe tomorrow morning.

RE:Is anybody else out there?
replyBrett:11/21/2007 02:12 PM NZST
Yes! If anyone is around and feeling shy or reluctant or whatever, come on in, the water's fine!

RE:Is anybody else out there?
replymonique:11/21/2007 03:15 PM NZST
Hi Everyone. I signed up for this online discussion, just prior to departing on holiday. I am now back for the duration and am trying to catch up quickly. My name is Monique, i am a 33 yr old mother of two with another on the way. I have training in journalism, background in administration, and property management. I am disabled with reduced mobility and eyesight following a stroke during my second pregnancy. The stroke was a result of a congenital defect. This would have been quite obvious in any pre-birth testing (scanning) had it been available, and she would have been informed that I had a 5% a year chance of suffering a stroke until the age of 50. In todays environment she might have been offered a termination. The 18 week development scan of my first son showed a possible indication (soft sign) for Downs Syndrome, but I chose not to have any further tests. Obviously this issue resonates with me personally, and I must admit I have an extreme position on the view that Life is a Gift. I find it hard to see the My Life My Choice point of view, but do enjoy robust debate and am glad to be able to participate
Regards
Monique

RE:LET’S CONSIDER APPROACH 4: KNOWLEDGE IS POWER
replyKelly:11/21/2007 03:35 PM NZST
Well hello everyone - I'm back from camp (and survived!).
Approach 4: Knowledge is Power. I am an avid supporter of this approach. The knowledge you have about anything, the more empowered you are able to give a balanced decision. But as we all know, life is full of shades of grey! However - I am still very upset hearing from families (all around the world) who have similar experiences to mine and my husbands. The information given at the time of a genetic diagnosis was so incredibly clinical and devoid of all human reality - which is shocking in this day in age. So, I fully support families being given the upmost support in the form of information (both from clinicians and the families who live the reality of raising a child with a particular illness/disorder, etc). I am a very active parent who supports many families overseas (from various online support databases), and quite often the information you require - you will find it from the 'experts' dealing with it on a regular basis. I have done postgraduate studies, and even though I am able to decifer scientific research - it is still the parents that I go back to for further learning. So - as you can see my position on this is quite strong. We need all types of 'knowledge' to be empowered.

RE:Is anybody else out there?
replynicci:11/21/2007 03:42 PM NZST
Hi Monique, great to hear from you. I think your situation is a great example of some of the issues this discussion will be examining. What do you when you're faced with risk factors, but no certainty about whether they will eventuate. Especially for something as variable as a stroke which can be all-debilitating or able to be completely recovered from. I guess epilepsy, diabetes and so on all fall in that category as well. At least with Downs (which we were rated highrisk for) there was a sense of knowing that if we had children with Downs then it was there from the get-go and we would never know any different, rather than wait for something that might or might not eventuate, and not know what it would be like when (if?) it did. Look forward to hearing more from you.

To focus the dialogue about Approach 4 ...
questionSam:11/21/2007 11:29 PM NZST
Here are the suggested actions for Approach 4 from the choicebook. This is not an exhaustive list and you may be able to identify other actions that would fit under this approach.

* Ensure medical practitioners are adequately trained to advise people about pre-birth testing.
* Ensure information about pre-birth testing includes cultural, ethical and spiritual aspects as well as medical facts.
* Involve families and the public in the development of information about pre-birth testing.
* Provide access to suitably trained people who are able to answer any questions and concerns about pre-birth testing.
* Ensure communities are involved early on in policy and decision-making about future developments (e.g. PGD).

Please review the actions. What makes approach 4 a good idea - or a bad one? How would these actions improve the situation? How could these actions create new problems or tensions?

RE:To focus the dialogue about Approach 4 ...
replyKelly:11/22/2007 09:15 AM NZST
I really like approach four. But I understand that knowledge can sometimes be questioned as to how accurate it really is (as many of us have said). And as most of us realise, knowledge is always changing in response to new research. So, how up to date can we possibly be? Well, we just have to use the best knowledge that we have at any one given time within that particular context. When I said earlier about life being many 'shades of grey', I guess this is also one of those times. We don't live in a perfect world (nothing in nature is perfect). We can't possibly know or understand everything - and that's just life's mystery. Why children are born packaged differently than others is a mystery in itself. But what we can do is improve the way the research and options are delivered to families in these pre-birth situations. Because, pre-birth testing just doesn't affect the unborn/preborn child - it affects that child's whole life and those around him/her.

Weekend availability
commentnicci:11/22/2007 09:57 AM NZST
Normal on Saturday, probably none on Sunday.

RE:To focus the dialogue about Approach 4 ...
replyBrett:11/22/2007 09:59 AM NZST
First it's great to hear all the people who have joined the forum. Lots of very interesting ideas.

When Kelly says "Because, pre-birth testing just doesn't affect the unborn/preborn child - it affects that child's whole life and those around him/her." I think she raises a very important point. The decision to abort a child does indeed echo around not just with the parents and immediate family, but the community as well. It can generate both compassion and anger. I think we tend to forget the wider implications of our decisions when we focus on "parent's rights" only, for example.

Knowledge is vital. The information-knowledge-wisdom continuum suggests that knowledge is not enough and that we need wisdom, which in one way is the life experience that deepens knowledge. While I don't think suffering is good for us, I think it does deepen us (whether we like it or not!). And so when Sam suggest that we need "properly trained" people to help us, I say yes, but that is nothing like enough. I worry that attitude will restrict those who will be offered to help us will only be those with a specialist training. The problem is that specialist training often puts on blinkers and those offering help then restrict themselves to their field only. That is what is professional! But often what we need in difficult circumstances are people who have just been exposed to a wide variety of life's joys and disasters and learned from them. When I am in a crunch I turn to my neighbours and friends. The Quakers (and I am a Quaker) have the tradition of what are called 'clearness committees.' I can request a clearness committee and listen and talk with them.

An finally as I have raised the issue of spirituality, it seems to have been lurking!, having spiritual beliefs can, of course, alter the whole way in which an issued is decided upon. So it seems vital to me - going back to what Kelly said - that information, knowledge and wisdom are used to help each person come to their own decision based on their own beliefs and experience. And if I may say so, the medical profession, in my experience, is particularly bad at this. Medical training is so deeply embedded in the western scientific model that doctors are often very unwilling to look at other points of view. There is nothing wrong with the science, it using to the exclusion of everything else that can get us into trouble.

Bit of a rant this morning :) I'd better go and eat some breakfast.

RE:Remaining time for the forum
replyBrett:11/22/2007 10:01 AM NZST
Yup I will be available on and off over the weekend. I am putting up new spouting on the house, so I'll be glad of the break.

Approach 4
commentnicci:11/22/2007 10:05 AM NZST
I'm still thinking about Approach 4 in general. Take for example what we now know about smoking. Most of us have knowledge that smoking is harmful. Few, if any smokers, are deterred by this. A pregnant woman smoking is less common than it used to be - but is still not uncommon. But what has changed is that those women become the focus of strong criticism from others, even hatred. If we live in a 'my choice miy right' society, (which arguably is the dominant option in society at present) then these woman should have the chocie to smoke during pregnancy, and the right to do so. But they are largely condemned for doing so, and partly because society views the pregnant woman as transferring costs to them as our taxes then pay for the hospital care for the asthmatic/premature/otherwise ill child (if it is ill). Where I'm going with this is, what if the risks and consequences of carrying a disabled child to term were equally well-known as smoking. As the knowledge gets better and better, are we ever going to see ourselves in a position where mothers are condemned for bringing those children into the world? Is "Knowledge is Power" another way of saying "Majority rules". Once we all know what is 'best', woe betide those who opt for something else? Vaccination and immunisation would be another example. Those who choose to go against the 'herd' get a lot of pressure from other parents. There's also a lot of social pressure to have two children, no more, no less. If we go for a 'knowledge is power' approach, how do we allow for those who want to base their decisions on other factors still feel that they are able to do so?

Approach 4
commentJoanne:11/22/2007 10:29 AM NZST
I feel I'd better contribute something to this discussion!
As with others I think that approach 4 is closely linked to approach 1: for approach 1 to really work it needs to be undergirded by approach 4.
But, as others have raised, what is the right kind / amount of knowledge? In general, I think more is better. But I know that not everyone would agree with that, some people would prefer not to know.

I think that in promoting approach 4 we need to take seriously issues around the delivery of information and support. Over this pregnancy I've been surprised by the amount of information that is out there (some supplied, some sought out), and how I've often had to quite consciously work at interpreting it all. Without wanting to sound arrogant, I had expected myself to be able to take on board and interpret more information than the average pregnant lady (a degree in Anatomy helps!). So the experience has made me wonder how all the other pregnant ladies/couples are coping. Information needs to be delivered in an accessible manner - both in terms of being understandable but also emotionally accessible. A good rapport with one's midwife (or other clincian) is particularly helpful, but I imagine that many people do not find themselves able to ask for further clarification at the risk of sounding ignorant. Does that make sense?

I think also that information needs to come from a variety of perspectives. Ideally the clinician would aid that, but often they do not. The perspectives of parents and people who have experienced the disability (or whatever) in question is invaluable. Referring a person to support groups (or even online forums!) can be just as beneficial as referring them to a specialist clinician.

Will continue my thoughts in another post

Approach 4
commentJoanne:11/22/2007 10:29 AM NZST
Continuing my last post (too much text!)...

In terms of support, I think this is particularly important in assisting a couple to process the information. I often find that it is not until I've talked through an issue (on whatever topic) with someone that I begin to really formulate my own opinion on it. Often the patient/parent in question will have adequate support from family and friends, but again often not. In addition to this, sufficient time must be given to process information, and perhaps to move through the grieving process a little before one can make a decision with which one would be happy in the future.

I fear I'm rambling a little... But some contribution is better than nothing! Hopefully I'll be able to check in on this fairly frequently over the next few days. However, I am waiting around for a baby to arrive, so anything could happen!

Sam's questions from last night ...
questionSam:11/22/2007 10:57 AM NZST
Good morning everyone and welcome Joanne.

Yesterday’s posts contain so many threads that we could explore further. Against this, we need to stay focused on the implications, both positive and negative, of the “Knowledge is Power” approach to pre-birth testing. Some of the threads related to Approaches 1 & 2. Let’s leave those for the moment. Following are some of my thoughts and questions about Approach 4 from yesterday’s posts.

From the discussions up until last night that the information we’ve been talking about for pre-birth testing relates to supporting 2 types of decision: (1) whether to test, and (2) what to do when the information from the test becomes available. Complex decisions. If people are relatively free to make these decisions (something like Approach 1), we’d need to understand how people make these decisions to tailor the ‘right’ information – so what information would best support these decisions? Is more information always better? How much weight should be given to medical information and risk factors or lived experience of people caring for or living with disabled/ill people or cultural/ethical/spiritual perspectives? How could we tailor information for the huge range of circumstances? Is that the government’s role? What could the government do to make sure people had access to the right information for them and that they trusted it? Is this a practical approach?

If, however, mothers/parents had much more restricted choices about pre-birth testing, what would be the government’s role in information provision? Would all information be considered a ‘good’ in this context? What might be the consequences of information about new tests from overseas?

Which leads me to remember Brett's point, new science, new clinical possibilities, new cultural understandings about reproduction, etc. Information is also important for policy development. What information would be valuable in this context. What about the costs and consequences and tensions?

We’re still trying to understand what people who support this approach would value and what the costs and consequences might be. My hope is that the questions above will help you explore what’s valuable as well as the cost and consequences of Approach 4, and expose the tensions and conflicts.

RE:Approach 4
replyKelly:11/22/2007 11:13 AM NZST
Here again (inbetween unpacking camp gear)....

Just wanted to agree with Joanne, Brett and Nicci. All of whom have some wonderful insights into the complexity of this issue. I agree with you Joanne, when you raise the issue of the use of power when it comes to knowledge. How much information do we all really receive and/or understand? Health literacy is imperative, and people need to feel comfortable to ask the questions (however minor they think they are) and have time to interpret. Brett's spirituality aspect is always overlooked - and my experience with my daughter has questioned and enriched mine simultaneously (and coupled with working with the critically ill, I can't help but appreciate all that life has to offer). And Nicci's concern with being pressured to conform to what is the 'gold standard' in current research, is worrying. We need to remember that people need support and respect, not judgement. We need to understand that not everyone is going to agree with our views and that the choices that people make may upset us - but it is the right decision for them personally (and they have to live with that decision).

I have worked in gynaecology, and cared for women having medical terminations (up to 20 weeks gestation), and I can personally say that it is a very difficult decision for these families. It is something that you would never wish to contemplate. And these decisions need to be made sometimes over a couple of hours or days. So as you can imagine, the way in which the pre-birth tests are conducted is extremely important. And the knowledge to base this decision depends upon many factors (including sensitivity, current research, time and the woman and her partner's inner strength - just to list a few). And occassionally women and their partners arrive at hospital secretly, not wanting their families to know. Doesn't that say a lot about society's judgement?

RE:Remaining time for the forum
replyJoanne:11/22/2007 12:54 PM NZST
I should be able to check in at least once over the weekend - as long as I remember to

RE:Remaining time for the forum
replyKelly:11/22/2007 01:58 PM NZST
I will check in on Sunday (we're away on Saturday for the Taupo cycle challenge).

What people would value in Approach 4.
commentnicci:11/22/2007 02:48 PM NZST
My response to what people in Approach 4 would value is:
- that they don't have to decide in a vacuum. Their decision can take place within the information they have sought and been given.
- That they can get that information from supportive professionals who can help them understand the information.
- That they can balance the medical information with community and social information - eg. meet parents with children that match the diagnosis of their pre-born child.
- That they can (in harmony with Approach 1) have confidence in both their right to make a decision, and their ability to make a good decision.
- That they don't have to justify their decision, once made because they have had access to the information and used it to suit their needs.
- That they should be able to have confidence in the information and the people giving it to them that there is no agenda behind the information.

What the problems are with this approach are:
- No amount of information is a guarantee. Diagnoses have been wrong in the past and will be in the future. This approach can't foretell the future.
- Sometimes there is no information, or it is prohibitively hard or expensive to access, or people are unwilling to share it. Improving access may use up valuable health dollars for elsewhere - and may not even be wanted, or if wanted, may not help.
- Public information is almost always culturally skewed. It may not be in your first language, it may not consider your religious requirements, it may not be at your level of literacy.
- When you are in emotional turmoil, for example when you have been told that your precious child faces a very real threat, your ability to process information is severely constrained. You are very susceptible to whatever people say to you and suggest to you. If anything, you need to be cocooned and given a chance to slow everything down and not make choices until you have to.

RE:This forum software
replyMarilyn:11/22/2007 03:33 PM NZST
At least it lets you post!! i'm not sure that i am able to!

RE:Is anybody else out there?
replyMarilyn:11/22/2007 03:38 PM NZST
glad you noticed!

Sam.
ideanicci:11/22/2007 03:48 PM NZST
Is it possible to forward this idea to the software gurus? I have a number of comments I would like to make about this software. It seems inappropriate to keep peppering this forum with them. Could they set up another group which all participants have access to, so we can at least get it out of our system by posting it somewhere? Thanks.

RE:To focus the dialogue about Approach 4 ...
replyMarilyn:11/22/2007 03:48 PM NZST
Kia ora,
Excuse my belated entry - I have posted before but I'm not sure if it appeared and I seemed to have missed a lot. however regarding approach 4. I am wary of "information" being given about cultural, ethical and spiritual aspects because they already involve so many value judgements - information which enables you to make a choice is not the same as 'information' which explains the choice you should be making (which is often the agenda behind such input) and how could all possible cultures and beliefs be fairly or adequately represented? such a commitment is beyond govt. resources or, I think, obligations. Certainly people have a right to know what the physical procedures are and the statistical outcomes; further discussion/consideration should be encouraged, perhaps even facilitated amongst those the people concerned are closest to. The extent of govt. assistance should be limited to helping concerned parties eg churches, ethnic groups, 'survivor' groups etc. become more expert in the assistance they are able to offer by way of counselling or support, but the govt. shouldn't have to be responsible for or involved in providing it. Also I/m not comfortable with the way even the first statement is phrased. medical practitioners shoudln't be 'advising' in this sense. they should be giving the facts and their professinal opinion - advising is a step beyond what i'd recommend.

RE:To focus the dialogue about Approach 4 ...
replyMarilyn:11/22/2007 04:08 PM NZST
Great it seems to be working now!! I love the idea of "clearness committees" - that's a beautiful phrase. In one sense we all seem to be saying the same thing, that the information and support needed varies and that we turn to differnt sources for comfort, advice, help or information. I don't know that we can blame the medical profession for not being able to meet all those requirements, even though many health professionals are absolutely outstanding and i know that not a single one of my 4 children would have been born alive without them. But babies are not born in isolation and perhaps the choiice about having a child with a disability woudl be less threatening if there was more support for it. I share Nicci's concern that we could end up with a society that stigmatises people who've chosen to have a child with a disability. (I already get frowned on for having 4 chidlren in an overpopulated world) My first post which didn't appear contained a link to an article I wrote about Christopher newell (I'll try it again) - a fantastic ethicist who made me rethink everything I thought I understood. I have found people extremely resistant to the idea of 'choosing' to have a child with a disability and yet let's face it we are all only temporarily "abled"!

Suggested Link:http://www.listener.co.nz/issue/3428/columnists/5320/thanks_but_id_rather_be_disabled.html;jsessionid=30DE9D8CA5C463E1F988D5C4FCE6F599

RE:To focus the dialogue about Approach 4 ...
replyBrett:11/22/2007 08:34 PM NZST
Hi Marilyn, glad you could find you way here :)

Yes, clearness committees are a wonderful idea. One thing the Quakers excel at is process. They've had 400 hundred years of practice at it!

I should make it clear that when I comment on the medical profession it is not individuals that I commenting on. There are good and bad doctors and nurses just like every other job. However I am concerned about the narrowness of the medical mindset and it seems to be getting worse rather than better, IMO.

RE:To focus the dialogue about Approach 4 ...
replynicci:11/22/2007 09:11 PM NZST
Superb article reference Marilyn. I encourage everyone to read it. I was particularly struck by the comment that we are considering "the value of humanity" - what does it mean to us to be human? I think we would all agree that people with disabilities are no less human. In fact, maybe they manifest more humanity than those without disabilities.

I wonder if we've got slightly off track. Is the use of PGD for us to have less people with disabilities? I mean, what is a disability? Isn't it a sliding scale (like so much in this area). Aren't we disabled compared to the geniuses among us? For me, the use of PGD is justified (as I mentioned earlier) to try and create life - rather than restrict it. Mum's who have lost child after child to miscarriage or failed IVF cycles. At present the response form the fertility gurus if you have a miscarraige or a failed IVF is "we don't know if it was you or your baby" - let's try again the IVF again. Heartbreaking if you're just setting the mum up to fail again, after all she's been through. And also we only have two funded IVF cycles in NZ. (Imagine if you were told you could only sex twice in your life to try and conceive - feel the pressure?)

If PGD were available the doctors could say: Right - PGD shows that there is/isn't a problem with the baby. SO that means..... and you can start to make some progress. Bearing in mind that at the end of all this we're going to be asked to make a recommendation, I wonder if you would think about whether or not you would support a recommendation that PGD be available to IVF mums. Sam, I know I've jumped way ahead - but I wanted to put that thought out there.