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Transcripts of pre-birth testing on-line deliberation groups

Transcript for Deliberation Group 3 - closed 13 February, 2008

WHO SHOULD PROVIDE INFORMATION TO PARENTS AND HOW SHOULD THAT INFORMATION BE DEVELOPED?
questionSam:02/08/2008 11:56 AM NZST
It seems from what you are saying that you accept that the information that parents need goes beyond the medical facts- such as that the child may have a percentage chance of a particular condition and that the severity of the effects is unknown. You are suggesting that parents need to know the social and cultural significance of the information- such as how other people have found it was to live with a child with that condition.
You might consider:
WHO SHOULD PROVIDE INFORMATION TO PARENTS AND HOW SHOULD THAT INFORMATION BE DEVELOPED? In other words should this be a matter for medical experts or should it be made available in a more informal way? Some groups have mentioned the mental health campaign on TV as being a way to help parents to understand the significance of testing in advance so they are in a position to make decisions and/or ask their medical professionals the right questions to get the information they want.

LET'S MOVE ON TO RECOMMENDATIONS
questionSam:02/08/2008 04:16 PM NZST
You don't seem to have much to add to approach 4 so let's think about the final stage of the process. You can still add more thoughts about approach 4 if you wish however.
This is when you imagine that you are a policy adviser and you are making recommendations to the Minister about what policies should be developed. This is not easy- as it means you have to make some decisions- but it is also the fun part!
In other tables we have gone through each approach and asked what you would recommend for each but this time I want to try a different approach.
It seems that many of you liked parts of each approach but not the whole thing as set out in the choice book. That is exactly what we expected! So for example you may have supported the idea of parents having a degree of choice but want there to be limits on that. You might value embryos and foetuses but think abortion should be permitted in some circumstances. You may have concerns that you think need greater consideration.
So what I want you to now consider is:
WHAT POLICY SUGGESTIONS DO YOU SUPPORT?
This section will continue through until Tuesday evening at which stage the table will close. I will be monitoring the site over the weekend so would love to hear from you all.

RE:LET'S MOVE ON TO RECOMMENDATIONS
replyskinkcity:02/08/2008 04:44 PM NZST
can I jump straight in with a few. I'll make them separate comments with different titles. Just regarding approach 4, I've already said I don't think the medical profession should be in charge of giving all the information, but they are the first point of contact for women I should think. Therefore they either need to be co-ordinators of the information, or work closely with someone else (eg social work style thing) who is the co-ordinating group.

Skinkcity suggestion no: 1
ideaskinkcity:02/08/2008 04:50 PM NZST
We would strongly recommend that current general abortion practise be brought back into line with the criteria stated in current legislation, and that government urgently investigate a means to implement this.

(We've talked a lot about abortion in general, and the current legislation gives abortion criteria that are far more strict than currently enforced, and as we can see from our deliberations, this problem REALLY colours and clouds the issue. It will be a clearer picture for everyone, I think, if general abortion practise is tightened up significantly!)

skinkcity suggestion no 2
ideaskinkcity:02/08/2008 04:53 PM NZST
we would recommend that pgd /ivf be allowed and funded in cases where there is a proven family history or clear need as determined by a specialist to test for a testable condition categorised as most severe.

skinkcity suggestion no: 3
ideaskinkcity:02/08/2008 04:55 PM NZST
We would recommend that pgd /ivf not be allowed/funded for conditions other than those categorised as most severe without referral to the ethics committee for consideration.

skinkcity suggestion no: 4
ideaskinkcity:02/08/2008 05:03 PM NZST
We would recommend that a group of specialists AND community experts be convened to create a set of criteria for conditions to meet in order to be placed upon a 'most severe' list. This group to consist of medical specialists, and members of the community who have expertise in each condition under consideration (ie parents, caregivers, people who may have the condition themselves, etc)

skinkcity suggestion no: 5
ideaskinkcity:02/08/2008 05:08 PM NZST
that a comprehensive, unbiased information programme be developed for each prebirth test and testable condition which covers all parental options, including but not limited to, pregnancy continuation and birth, termination, adoption, embryo selection; and including up to date contact information for all community and support groups relevant to those testable conditions and parental options, and which makes counselling available to parents if desired.

skinkcity suggestion no: 6
ideaskinkcity:02/08/2008 05:10 PM NZST
that within the legislation boundaries set, parents, and ultimately the mother, have the right to decide what course of action to take.

Those are just ideas.
commentskinkcity:02/08/2008 05:16 PM NZST
They're my ideas at this stage, I guess it would be great if we can find some ideas that we can agree unanimously on. (I don't think we're in a position to ask for a blanket ban on abortion or pgd, but I also don't see that we should pass up the opportunity to tell the government that we are not happy with the current statistics and that they go too far, and that the possible direction towards eugenics is unacceptable.)
As far as the choicebook goes. I'm going to go through later this evening and list the actions already laid out there that I personally support with the limitations I think we've come up with.

RE:Those are just ideas.
replyskinkcity:02/08/2008 10:56 PM NZST
heh heh my ideas are getting rated. If you want to rate them then maybe put up your suggested ammendments or thoughts as well? That way we can develop some group suggestions.

RE:Those are just ideas.
replySam:02/09/2008 11:30 AM NZST
Hi Skinkcity-It is really great to hear your ideas. I agree that it would be helpful to hear some other ideas or refinements that the others in the group support. I suppose on such a lovely fine Saturday many people are outside rather than at the computer!!

RE:LET'S MOVE ON TO RECOMMENDATIONS
replyBernice:02/10/2008 04:30 PM NZST
Yes very busy weekend, I'll get on to it Monday.

RE:Skinkcity suggestion no: 1
replyJane:02/10/2008 04:48 PM NZST
I don't feel the same way about this one. I support the readily available access to abortion that we have in NZ and would further support legislative change to make the current de facto position more firmly enshrined in legislation. What I don't support is the fully condoned practise of doing away with a foetus/ baby that would have been continued to term if it wasn't found to be 'defective'. My position is that its fine to continue/ not continue pregnancies on the basis of a decision that its not right to have a baby but not on the basis of what TYPE of baby

RE:skinkcity suggestion no 2
replyJane:02/10/2008 04:52 PM NZST
I would recommend that we move away from the current levels of 'screening' ie no more ultrasound unless there is a CLEAR medical indicatuion for this. No more nuchal calculations. I think that IVF which as I understand is generally used for infertility is outside of the scope of this debate except as part of the PGD process. In which case I support skinkcity's no 2 suggestion :)

RE:skinkcity suggestion no: 3
replyJane:02/10/2008 04:53 PM NZST
Absolutely. I think that ALL PGD would need to be considered by an ethics committee on a case by case basis

RE:skinkcity suggestion no: 4
replyJane:02/10/2008 04:59 PM NZST
Agree with this but think this could be the composition of the 'ethics committee' and that they would have to decide EACH case. The committee should be loaded in favou of disability advocates/ family members/ disabled people with maybe a geneticist NOT lots of doctors who have vested professional interest in being able to perform testing and abortions. I don't believe there are ANY conditions where the blanket right to terminate/ test for exists. there are a range of 'severities' within all 'conditions' and a range of levels of what might be appropriate eg a family who have lost 3-4 chldren to an inherited condition may require a different level of intervention compared to a family where the condition MAY exist

RE:skinkcity suggestion no: 5
replyJane:02/10/2008 05:03 PM NZST
And attendance at a programme similar to the pre adoption/ fostering programmes currently happening be compulsory prior to any testing. These programmes would focus on the positive aspects of parenting a disabled child and cover such topics as the impact of a disabling society.

RE:skinkcity suggestion no: 6
replyJane:02/10/2008 05:23 PM NZST
Not necessarily. In a process similar to the FGC, those who are also directly involved (maybe whanau or grandparents) should have an opportunity to contribute to the decision. As I see it these decsions would not necessariy be being made in a very short timeframe as the process for PGD requires planning. It is different from the current situation where the scan/ testing identifies that the growing foetus has a 'problem' and the pressure is on to 'get rid of it before it gets too far along.

The underlying reason
commentJane:02/10/2008 05:30 PM NZST
I think that society (whoever/ whatever that is LOL) needs to wake up to the fact that ALL of this is about preventing people from being born for no other reason than the person is at risk of being different from some arbitrary idea of 'normal' or 'perfect'. This is very different from abortion per se and tells me, and all disabled people and in fact people who believe in the idea of a just world where everyone is valued and 'equal', that the world isn't like this and the legistators and power holders don't want it to be this way either. The old adage - What doesn't kill us will make us stronger- applies equally to entire societies as it does to individuals.

Summary
commentHelen:02/10/2008 05:32 PM NZST
I have been keeping up to date with this discussion & have been interested in the differing viewpoints. I don't feel I have much to add as it has all been said, & much better than I could!
I feel some opinions are coloured by a persons religion & while that is fine for them should not have to apply to those of a different reliogion or none at all.
I don't believe any mother has an abortion for any reason ,without much angst & we don't need "do-gooders" telling them what they should do. It must be hard enough anyway.
I believe that any mother / parents who have all the information necessary & still want an abortion should be supported to do so. It wouldn't be something I would ever have wanted to make a decision about & glad I didn't but can see under certain circumstances it is the only option.

Summary cont
commentHelen:02/10/2008 05:39 PM NZST
Some people are more able or willing to cope with a disabled child whereas others know they could not do so. There is enough that can go wrong between conception & birth so perhaps those conditions that can be detected should be tested for & the parents decide if they can carry on with the pregnancy. I am not denigrating those with disabilities but am sure they would rather not have them, whatever they might say to the contrary. This is not a perfect world & life is hard enough without problems that could be prevented.
I don't think I am putting this very well - not a "abortion for all" advocate, just pro-choice.

Feedback to the designers of this forum
commentJane:02/10/2008 05:40 PM NZST
I would like to feedback that I have found the format of this webbased deliberation extremely poor and I wonder if that is the reason that most of the people who signed up gave up within the first few days. I think I counted about 15 participants and yet it has been about 4-5 of us that have made the effort to keep posting. If the BioEthics Council decides to do this again can I suggest that you use a different company to host it next time. It would be so much more user friendly if the topics/ themes were linked together so that I could read all the discussion on any one posting on a single page. The stupid emoticons and rating stars need to go- we are adults after all. This format is so timewasting as I have to trawl back though the pages of postings trying to find the particular posting I want to respond to. The various viewing options at the top of the page simply don't work (and never mind that the site was down for most of yesterday!!!) Having got that off my chest I have enjoyed the comments from both Sams and the opportunity to engage with everyone else. I am cynical enough to have little confidence that we are really making a difference as I know that the corridors of power are littered with 'consultation' documants that have had no impact of thedevelopment of policy or legislation. Did you know that nothing the Law Commission has ever recommended has ever been implemented??!!!

choice book actions
commentskinkcity:02/10/2008 05:51 PM NZST
I'd like to hear more voices regarding suggestion 1.... people who decide to terminate just because they don't think its the right time for a baby are something I feel VERY strongly about, and I'm not going to go into it further than to say to me that's way worse than someone making a tough decision about a child expected to suffer a very brief and excrutiating life. New Zealand needs to wake up from its culture of shocking selfishness and start to take responsibility for itself and those most vulnerable ones who can't speak out for themselves, this includes the community with disabilities, I agree completely with that Jane, every time a test shows positive people make decisions about future members of that community without even finding out what its like to live with that condition or live with someone with that condition, but every other life that is terminated would also have been a member of MY community and this deeply concerns me, not only for what it says about our society now, but also for what it says about the direction our society is going to take in future. The points I'm making in idea 1 are a) according to law, and to the criteria, and to any human ethical consideration abortion is far overused as a method of birth control, touted as easy and convenient when in fact it is neither, killing the foetus and damaging the mother. b) when we come to talking about such things as PGD, it totally clouds the issue. A large percentage of New Zealanders, will have the same reaction to this as evidenced through the process so far. 'Oh no, don't we have enough abortion in this country? this is just looking for another excuse for increased abortions!!' And its difficult to discuss with many people past this concept. If the government was seen to be caring about what terminations are performed and whether they were for an acceptable ethical reason not a convenience reason, there would be less of a knee jerk reaction and it would be possible to have more meeting of minds between supporters of all opinions.

ok, my supported actions from the choicebook follow:

RE:Feedback to the designers of this forum
replySam:02/10/2008 06:00 PM NZST
Hi Jane. We really appreciate your having stuck with it even though you found the format difficult. There was consideration given to having threads but the problem we found in the past was that people find it hard to stick to one topic in their posts so the threads got very confused. The idea is that this is rather like normal conversations where people tend top "jump about" rather than sticking to one topic. That said we will be reviewing the process and would love to hear from all of you about your thoughts on the process.
Incidentally it's not correct that the Law Commission's reports have not become law - the Evidence Act and the Property Law Act are recent examples that have been put into effect.

RE:choice book actions
replyskinkcity:02/10/2008 06:01 PM NZST
ooh, there are more comments. We're all on together! Helen it sounds like you also like what I put down in no.6 that in the end it should be the parents' decision. I'm totally in agreement that if there are others who have vested interest in the decision, Family group conferences, huis, all good, they should definitely have provision to have their voice heard and be part of the decision process, but it still has to come down to 'someone' ultimately. Also, I like ethics committees too, I think they are a very valuable tool, and for the purposes of pgd also very important. Mostly in my suggestions I was thinking about the funding aspect (dunno why). They should definitely be a good cross section of experts, not just medical professionals. I love the idea of courses for those undergoing pgd, what a cool idea.

RE:choice book actions
replyskinkcity:02/10/2008 06:16 PM NZST
I support most of the restrictions on pgd currently listed under the my life-my choice page actually, although I would think that if we could have a commitee come up with a list of the testable conditions based on severity it would help parents get an idea of how the committee decisions are likely to go. For the life is a gift approach page I support the first half of the first action 'allow testing that benefits the mother and helps parents prepare for the child', but I would add the limitations that fit with my earlier suggestions, and I would omit the second half of that action. I support the third through seventh actions. For the Tangata Whenua approach I support actions 1,2,4 and 5. For action 3 its worded as if its a sneaky approach 1 action. I certainly think that I would support equal access to testing for any ethnic or socioeconomic group as it fits into my earlier suggestions but I wouldn't support fully funded access to any prebirth test in existence just because the woman wants it. For the knowledge approach I support 2 through 5, with a lot of emphasis on 2 and 3. I support action 1 if it is referring to making sure the information available is uniformly available throughout the country, but if it describes keeping the current amount of information and just making sure its properly spread out, I don't support it. I think that there need to be much more information available, and some thought needs to go into improving presentation and access.

RE:choice book actions
replySam:02/10/2008 06:17 PM NZST
The only people who can have PGD in NZ under the present guidelines are those with a known risk of a serious condition. The "seriousness" is decided by a clinical geneticist so the parents will be aware of the possible condition by having a child with it already or knowing of it in their family. Of course they would not pursue this option which means they have to have IVF unless they are determined to try not to have a child with the condition.They will have had genetic counselling in order to give informed consent I assume. There is no suggestion that people are using PGD in NZ for "frivolous" reasons. That said it does mean selecting against certain embryos because they carry the genetic condition tested for. Usually the parents could have gotten pregnant naturally and terminated the pregnancy if the condition was present but some parents prefer to avoid having terminations by using PGD. Some people think there is a moral difference between embryos in the "test tube" and those that have implanted in a woman and lead to a pregnancy.
Even accepting that the wider whanau have an interest in these decisions would you COMPEL parents to engage with their wider family? or do you just think it would be a good idea? I ask the question because some people are estranged from family and would not wish to have thenm involved in their reproductive decisions.

RE:Feedback to the designers of this forum
replyskinkcity:02/10/2008 06:20 PM NZST
I agree that the forum is not the most user friendly ever. I would like to be able to read through the other posts as I'm writing a post, at the moment to do that I have to open a new explorer window, and thats rather slow and annoying. I don't mind the thread thing so much, or the smilies, but its hard to keep track of what you want to say, to agree with or disagree with, when you can't easily refer back to anything except the last post (which sometimes isn't even the last post any more by the time you submit and return!).

RE:Feedback to the designers of this forum
replyskinkcity:02/10/2008 06:34 PM NZST
I agree Jane that I've been a bit dismayed too at the number of people who've started in and then left the forum. It could be for lots of reasons I guess, but nonetheless sad, and I would have liked to hear more of what they had to express. I stuck it out because I feel like its a chance to be part of some important decision making for once. We get a chance to vote at election time, and thats about it usually, so I've found this opportunity to participate really valuable regardless of the national outcome. I'll go away from this having learned an awful lot about my own opinions and feelings, let alone gotten to experience the thoughts and feelings of others here, and have a little bit of satisfaction that I've said my bit somewhere that 'counts'.

RE:choice book actions
replyskinkcity:02/10/2008 06:44 PM NZST
just a comment regarding a suggestion made a while back (either in this group or reading the closed groups, can't remember, not searching for it!) that pgd should be made available/funded for the second cycle of IVF in infertility cases where the first cycle was unsuccessful for unknown cause, I think I'd support that too if tests developed to a point where that would be helpful. I imagine at the moment PGD is only really useful when you already have an idea of what you're looking for. Jane mentioning infertility in one of the recent posts reminded me.

RE:choice book actions
replySam:02/10/2008 07:06 PM NZST
So Skinkcity are you OK with using PGD for the selection of embryos but once the woman is pregnant you would not favour using prebirth testing and then deciding to terminate a pregnancy if the child will have a disorder?Would you have this view no matter what the disorder was? or are you more concerned with terminations when the disorder is one you would see as less serious?

RE:choice book actions
replyskinkcity:02/10/2008 07:20 PM NZST
I think what I'm trying to say is tricky because personally I'm not ok with pgd or termination for any reason at all. BUT I think what I am trying to say is that because we are not all me (!) I think pgd should be allowed for very serious reasons and parents should have the right to choose pgd in those cases, and I'm also saying the same for terminations (given that my personal abhorrence is understood), I have issue with terminations for less serious disorders certainly. To me parents who terminate for less serious disorders are doing so from lack of education, understanding, and experience, or prior bad experiences, not because the condition their beautiful child may be subject to will be unimaginably devastating in the future. If we improve support and education (making support an actual reality instead of one of those governmental lip service things), why would there be a need to terminate these pregnancies?

RE:choice book actions
replySam:02/11/2008 09:37 AM NZST
Hi Skinkcity I think it is great that you are able to have strong views yourself but also allow that others may not share these so you suggest a framework that will allow for the views of others- that is most impressive! The issue then turns on which disorders are sufficiently serious - that has been an issue overseas eg in the UK people have considered that cleft palate or club foot are sufficiently serious to justify a termination while other people say those conditions are treatable so not sufficiently serious. That said cleft palate can be an indication of other much more extensive problems.
Do you think eacgh case should be considered separately? If the medical professionals and the parents disagree whose view of serousness should prevail?

RE:choice book actions
replyHelen:02/11/2008 10:43 AM NZST
Hi Sam.
That is a difficult question. Surely if the parents have had all the advice,counselling & info available the final decision should be theirs as only they know whether or not they could cope. Surely there is enough child abuse today without forcing parents to continue with a pregnancy they aren't happy with? Perhaps if all parents had to pass some sort of "competency test" there would be better parenting & with that would come a better understanding of what it means to be a parent. Maybe this would mean being more able to cope with a disabled child, hence less abortions after pre-birth testing.

RE:choice book actions
replySam:02/11/2008 10:54 AM NZST
Hi Helen Welcome back! Do you mean some sort of compulsory training before people are permitted to have children? That would be a bit tricky considering lots of pregnancies are accidental and it would be hard to oversee people's use of contraception! Or do you mean that if people wanted state benefits a condition would be to complete a course? In that case it could be seen to be picking out the most disadvantaged people as better off people would not be effected. Or do you mean parenting courses in school for all?

RE:choice book actions
replyskinkcity:02/11/2008 11:20 AM NZST
interesting questions sam. Has anyone considered the idea of a course for those wanting the single parent benefit? This would cut across all demographics, would catch teenage new mums and recognise that parenting alone is TOUGH and could provide counselling not only for the parenthood side of things but could help with other issues like the ones that got the mother to that point, eg divorce, alcohol abuse leading to accidental pregnancy etc etc. I'm sure that could be cleverly advertised to emphasize the benefits. There could be refresher courses for any of those who have subsequent pregnancies too... Could there not also be courses for other parents (in stable relationships) that are not compulsory but attached to some sort of bonus or reward, maybe plunket could be funded to run these or co-ordinate them. I'm not sure school parenting courses would be that easy, teachers would rebel I expect from the thought of added pressure, (NCEA is already a nightmare), and they run these in the states and still have big problems there. Everything so far seems to me to be indicating the need for better co-ordination between different groups. Between the medical profession and community organisations, between the health system and welfare systems.

RE:choice book actions
replyskinkcity:02/11/2008 11:30 AM NZST
as to the other questions. I don't think I'm being impressive, just recognising that this isn't just a yes/no vote. If it was I'd vote no, others would vote yes, and we'd either end up with an impasse or a bunch of winners vs a bunch of losers. And, to use my school uniform experience (which obviously I have a mental hang up about!) if the majority is only 60% for eg, that's a LOT of unhappy 'losers'. Its not just a vote, so theres the opportunity to find middle ground. We should all be willing to do that shouldn't we?
I think that there should be 'rating' of conditions by the medical profession that are very serious, and for the most extreme perhaps those on that list could bypass the ethics committee for approval IF they so wish, and for everyone else they should still involve the ethics committee. If the parents could make a good enough case to the committee regarding cleft palate because for instance, the serious condition they are worried about from family history is one that is associated with cleft palate, then shouldn't that be sufficient for the committee to say, ok its the parent's decision in this case... but I do think that allowance for parents to make the ultimate decisions should still be within bounds set by law, not just left open for any condition or situation, because as we can see from the abortion law and others, if there's room for stretching, people will jolly well stretch, (and even where there doesn't seem to be stretch room, they still will do it), so to minimise this there has to be some kind of clear boundary set somewhere and I think a committee as I've suggested, (medical + community experts) are probably in the best position to do this.

RE:choice book actions
replySam:02/11/2008 11:40 AM NZST
Interestingly you are moving towards the status quo. Under the present rules, certain uses of PGD are established procedures that can be undertaken at the wish of the parents if a clinical geneticist and fertility clinic agrees the child is likely to be "seriously impaired". The situations concerned are on p8 of the choicebook.
If parents want to use PGD in any other situation they would have to get consent from the ethics committee (ECART) on a case by case basis.
Does this mean an ethics committee is a more appropriate decision maker than the parents? if so why do we think this?

RE:choice book actions
replyHelen:02/11/2008 12:08 PM NZST
Hi Sam I am not sure how a parenting course could be implemented but surely it is possible. I don't see it as discriminatory & should apply to all parents. Perhaps ante-natal courses could be expanded to include parenting skills & could be compulsory for all with an incentive of either the DPB or free nappies. I do think though that if Plunket was properly funded to provide more home visits a lot of todays problems would not happen. Did we have all this child abuse in the days when Plunket visited in the home for weeks? (Sorry, a bit off the track but feel very strongly about all parents being good parents!)

RE:choice book actions
replyskinkcity:02/11/2008 12:25 PM NZST
yep, I am in favour of the status quo in that regard aren't I.

RE:choice book actions
replyskinkcity:02/11/2008 12:32 PM NZST
I think the parents are in an excellent position to say what they THINK will work best for their situation, and are the ones who have to live with the result of any decision, but on the other hand, its a bit like teenagers. They can say what they THINK will work best for them, and they have to live with their own results, but there is a lot of wisdom that comes from experience, and particularly the combined experience of many who have been through, and been involved with, similar cases that a parent just cannot provide for themselves. An ethical committee should take the situation, circumstances, history AND wishes of the parents into account when making a decision, not only the medical facts and circumstances. In that way, the parents are more involved in the decision. In fact, the best scenario would be to have the committee convene WITH the parents and all should discuss together, rather than the parents submit, and then wait for a decision made somewhere behind a closed door. I don't know how it works at the moment, so I may just be supporting status quo again for all I'm aware.

RE:choice book actions
replySam:02/11/2008 12:42 PM NZST
When ECART makes a decision they do not meet with the parents in person- it's decided on the basis of information provided on the application forms. It is a quandry isn't it? You can't really know how you will be affected if you have never been in a situation before and yet a decision has to be made.

RE:choice book actions
replyHelen:02/11/2008 12:47 PM NZST
I agree that the parents should be involved in any decision from the ethics committee. How awful to have someone else making such a life changing decision for you without you having any input.

RE:choice book actions
replyskinkcity:02/11/2008 01:20 PM NZST
why do they not meet? is it a question of scheduling or transport or is it felt that meeting the parents in person would somehow make it harder to have an unbiased decision? I think parents should be a part of that deliberation process.

RE:choice book actions
replySam:02/11/2008 01:29 PM NZST
MY UNDERSTANDING IS THAT THERE ARE REPORTS FROM COUNSELLORS, LEGAL ADVISERS, MEDICAL PROFESSIONALS BUT THAT ECART MADE THE DECISION NOT TO MEET THESE VARIOUS PARTIES PERSONALLY. SOMETIMES THE PEOPLE WRITE A LETTER TO ECART.
MOST OF ECART'S WORK RELATES TO THINGS LIKE SURROGACY AND EMBRYO DONATION- VERY LITTLE RELATES TO PGD BECAUSE MOST USESOF PGD ARE ALREADY ESTABLISHED PROCEDURES. THE CREATION OF A "SAVIOUR SIBLING" WOULD BE ONE USE OF PGD THAT WOULD HAVE TO GO TO ECART BUT THIS IS VERY RARE.

Questions
commentSam:02/11/2008 04:06 PM NZST
We are starting to wind up. you have been a fantastic group and have made a number of interesting points that will be very valuable for the Council.
You are welcome to continue giving your thoughts about recommendations but as we finish tomorrow afternoon at 6pm this is your chance to ask me any questions or make any comments that you would like to make.

RE:Questions
replyskinkcity:02/11/2008 04:46 PM NZST
I'd like to thank both Sams. Its been great talking with you, and I've also enjoyed meeting all the other contributors. My thought are with the council as they take all these things on board and work towards the future. I'm certainly sticking through til tomorrow, but I want to make sure I've said thanks, and best wishes everyone.

RE:choice book actions
replyBernice:02/11/2008 07:24 PM NZST
i too have trouble trying to read all the posts and remember what I'd like to reply, so mostly I don't. Regarding what you just reported Sam about Cleft Palate and Club Foot considered possibly serious enough to abort in the UK I am horrified. I have known several people with a cleft palate, and some of whom I would never have known if I hadn't been told. We have a young boy at my daughter's primary school with a cleft palate and he's a very normal engaging intelligent young boy. My great niece also had a severe cleft palate and at age 3 is progressing very normally and other's don't even realise she has had numerous surgeries. Her parents are such strong loving parents who may not have felt they could cope with the many traumas they have endured over the past three years, but their little girl is a treasure, also of normal intelligence, no other noticeable 'defects'.
While I am totally against abortion anyway, these sort of ideas are another reason to put very strict boundaries around abortion regulations, that is scary!

RE:choice book actions
replyskinkcity:02/11/2008 07:33 PM NZST
I had friends here in palmy who adopted a little girl with a club foot and hip issues a number of years ago. she was the sweetest little lady. Sadly she had a very short life before being involved in a car accident. With so many lives ending tragically all by themselves, why do we feel the need to add to that number on purpose I wonder. Hopefully as a country we can remember when we make legislation that the vulnerable and voiceless should have someone advocating for them and not just listen to the loudest noises. I really think this type of consultation is marvelous, and hope it will be repeated in the future when difficult national directions need to be taken, perhaps though with a forum format that goes through some laypersons' beta testing or something!!

my summary
commentBernice:02/11/2008 08:18 PM NZST
I cannot agree with approach 1, I do not agree that it is anyone's choice whether or not to kill another human being, whether it is part of their family or not. I believe we in society do need to speak out for those who have no voice, against those who feel that they have the right to decide if a baby has a right to live or not.
I agree fully with approach 2, that Life is a Gift. I believe that life should not be created, in any way, and then disposed of, for any reason. I believe there should be far more easily accessible, government funded support for families with disabled children, and for disabled adults.
As I have already said I do not see that Approaches 3 or 4 are stand alone approaches but just additional aspects to be incorporated into approach 1 or 2.
I know I'm very politically incorrect and I'm not as accommodating as skincity but have to stick with my strong view that abortion, the killing of unborn babies (lets not desensitise it by calling them fetuses), should not be offered as an answer to any prospective mother's potential problem. It should be as unacceptable to kill the child as to kill the mother.
There is so much research available, but undesirable by the media or family planning, on the psychological effects of abortion on the mother, as well as physical long term effects too.This is not commonly used in what should be obligatory counselling for prospective abortion clients, but hidden under a blanket of what the government wants people to believe.

Along with others comments regarding parenting classes etc, I agree that teen parents who wish to be on a benefit, or have children in govt. paid day care, should have compulsory attendance at these classes. I also have an idea that if a woman goes on the DPB she should not have any increase in benefit simply because she chooses to do what it takes to have another child. She needs to take responsibility for herself and the children she already has and take stock of whether she can afford another child on the same money she now lives on.

RE:choice book actions
replyBernice:02/12/2008 08:26 AM NZST
Thanks for your succinct commments which I mostly agree with wholeheartedly.

Note to Sam: Apart from my comments against abortion as a whole, please count me in with skincity's suggestions, I can't express myself that well sitting at the computer. I guess I should write things out on paper as I read and then put it all together, but that seems so tedious that I haven't.

I appreciate be part of this forum, I too am disappointed that most of the candidates dropped out, especially the pro life ones, cos we are a very small voice now and very small people need us to keep up the good work
.
bye to everyone.

Sorry that the website has been down
commentSam:02/13/2008 08:40 AM NZST
I expect that you have noticed that the site was down for much of yesterday. I apologise for that but as you no doubt are aware it is beyond our control- but it was really was an unfortunate time for it to happen (although no time is good). We are trying to get the site to continue until 6 pm today to allow anyone who wanted to make some final comments to have a chance to do so.

RE:Sorry that the website has been down
replyJane:02/13/2008 09:04 AM NZST
Hi Sams- Just a quick note to say thanks for the opportunity to participate, which, despite my cynicism, I have enjoyed and do think overall this has been a good forum to develop ideas. I woneder if you have been able to monitor the number of people who have been watching but not contributing? and are you able to think about making the site more user friendly another time to possibly keep more people engaged? I did like the way that the initial 'flyer' was on a public website (Trade Me I think) and hopefully on some others as well ? Stuff maybe. Anyway- goodbye and good luck :) Cheers Jane

RE:Sorry that the website has been down
replyHelen:02/13/2008 11:15 AM NZST
I did try to check in yesterday & am pleased to know it wasn't a problem with my computer!
I have enjoyed the forum & appreciate the opportunity to be part of it.
I do wonder if some of the participants were here to push their own viewpoints & not necessarily to see the wider picture. Perhaps a wider cross section of the community would be useful in future forums though not sure how you could ensure this. Perhaps some sort of survey?
Thanks to both Sams for their summaries & comments.

Wrap up (too late?)
commentDave_Kent:02/13/2008 11:58 AM NZST
I have really appreciated the honesty and mature dialog in the forum. Considering that we represent the full range of a quite contentious issue that's quite an accomplishment!

Summarising my opinions:
- I don't like the idea of abortion as a way of getting rid of people who are sub-standard, inconvenient or unwanted.
- Abortion is most palatable when the foetus is depersonalised. So I favour parents being given the broadest possible education about their child as a way of reducing the urge to abort.
- As many tests/scans as possible should be available to all
- It should be compulsory to go through an educational program about child/adult versions of particular deformities/syndromes etc. before any decisions regarding termination may be made
- Medical professionals should be required to take at most an unbiased approach to medical terminations, so that coersion would be grounds for malpractice.
- Non-medical scans such as 4d ultrasound should be free and widely available to provide a balance to the diagnostic scans that produce a one-item resutl such as 'disabled', 'normal'
- I don't think that a mother has the right to terminate a pregnancy because it infringes the rights of the foetus, but it would be possible to implement a law along those lines in NZ at present.

Leaving aside moral arguments for or against abortion (and not specifically related to testing...), I don't think anyone would see our 18,000 annual abortion rate, or our high rate of teenage pregnancy as a good thing. The best way to reduce this number is to change the balance of incentives so that different choices are made.
- The role of men in preventing unwanted pregnancies is completely unaddressed in NZ.
- If the father of the foetus was required to pay for abortion it may incentivise men to become more involved in decisions regarding contraception. I presume there are a lot of guys who think of abortion as an alternative to responsibility. "It's not my fault she wanted to keep the baby".
- I have met a few solo mothers who intended to get pregnant, but I assume the majority get there by accident. Any programs that are successful at getting these women to value not being pregnant deserve as much support and promotion as possible. We all benefit if more women are diverted from solo parenting or abortion into delayed motherhood in a stable relationship, which also tends to correspond to better employment oppourtunities, health and educational outcomes etc.

RE:Wrap up (too late?)
replyDave_Kent:02/13/2008 12:01 PM NZST
That should have been "it would _not_ be possible to implement a law along those lines in NZ at present"

(another suggestion re. the forums would be the ability to edit your posts for a short time after they are submitted...)

RE:Summary
replyDave_Kent:02/13/2008 12:14 PM NZST
Helen - I thought this was an interesting comment:

"I feel some opinions are coloured by a persons religion & while that is fine for them should not have to apply to those of a different reliogion or none at all."

The irony is that our modern western secular democrasies evolved from the reformation in Europe. Before that time the government/king literaly had the right to determine the religion within their realm, and would generally execute heretics/athiests. As the religious principles of the reformation began to spread there were massive problems between citizens who wanted the freedom to exercise religion as they saw fit, and governments who still considered it their right to impose. In the end, the reformers fought as much for the right to be able hold their opinions as for the opinions themselves.

Also, I don't think religion _colours_ someone's opinions, I think that the religious aspect of someone's views (including such things as the idea that nothing exists beyond the physically observable world), are as integral ethnicity, gender, age, personality etc. Marxism doesn't _colour_ a socialist's opinions, any more than growing up in NZ colours your accent.

Oh dear, I've started raving. Sorry about that, I'll stop there and go get some lunch.

Thanks to everyone who's taken part and to the Sams, and all the best to those who are about to give birth.

RE:Summary
replySam:02/13/2008 12:32 PM NZST
Hi Dave_Kent- great to hear from you again. Could you please expand on what you meant by: " Also, I don't think religion _colours_ someone's opinions, I think that the religious aspect of someone's views (including such things as the idea that nothing exists beyond the physically observable world), are as integral ethnicity, gender, age, personality etc. Marxism doesn't _colour_ a socialist's opinions, any more than growing up in NZ colours your accent."
I'm not quite sure what you are getting at but it sounds really interesting.
Helen- did you mean that there are issues should those people who do not hold a particular religious view be required to act in accordance with the mores of that religion?

RE:Summary
replyHelen:02/13/2008 01:04 PM NZST
Hi Sam,
I think what I was trying to say was that I wonder if members of certain religions which are totally against abortion don't think of the wider picture. If you are not a member of that religion do the people who are have a right to make you feel guilty.While I agree that abortion as a means of contraception is wrong there are occasions where parents will want/need one & don't need to feel guilty as well as devastated by the abortion. I doubt there are many who think lightly of having an abortion.

RE:Summary
replyDave_Kent:02/13/2008 01:23 PM NZST
Well it's getting a bit off-topic, but...

It's the idea of placing value-judgements on the factors that determine a person's opinions. For example if someone has arrived at the pro-choice position via a feminist ideology, is that more valid than someone who is pro-life as a result of religious ideology?

Religious factors are as much a part of our decision-making apparatus as political, ethnic and personality factors. After all, the idea that there is nothing other than the physically observable world (imagine there's no heaven, only sky above) is a religious statement as much as to say that the prophet Mohammed received a revelation in the Arabian desert, and either can be equally influential to those who believe them.

I oppose the idea that arguments should be disallowed because they contain an unacceptable religious component. If we are going to chose some criteria for banning arguments I think the incredibly lethal idealogies of socialism and communism would be a good place to start ;-).

RE:Summary
replyDave_Kent:02/13/2008 01:35 PM NZST
Helen

I agree with the idea that in guilt is not a good method for promoting the pro-life position. There's v. little point in making a person who has already had an abortion feel guilty, besides it being behaviour that is contrary to a good number of religions and just bad marketing.

Do you see any role for guilt in modern society?

RE:Questions
replyMegelli:02/13/2008 01:41 PM NZST
Hi
You asked for feedback regarding why I haven't posted lately. For me, the sheer volume of things to read was simply too much with a young family! Along with this I feel that the debate had become one of whether to abort or not. I beieve this is a skewed view. The discussion was about PBT. Not everyone makes the choice to test with that as their outcome. I, for one, would not abort, but would like to get prepared and get support ready if the need occurred. My personal opiion is PBT should be available to everyone if it is indicated that they may need it. I feel that it should be state funded so that ALL have access to it. However, I believe what a person cooses to do with the information they gain form PBT should have some restraints imposed.

RE:Questions
replyMegelli:02/13/2008 01:42 PM NZST
Excuse the typos above! I was writing in a rush! Cooses is meant to say chooses!

RE:Summary
replySam:02/13/2008 02:06 PM NZST
This is not really off the topic because it speaks to the concern that we have heard that some views may be discounted merely because they come from a religious perspective.Surely in a pluralist society it would not be acceptable to disallow or denigrate an opinion because it is faith-based rather than from some other ideology? Is this to suggest that some frames are more able to be proved or justified? What do other people think?

Dropped out of forum
commentDebra:02/13/2008 02:53 PM NZST
Hi Sam and everyone else. I have to admit to being one of those who participated early on, then dropped out, and this was for a few reasons. First, I found the sheer volume of reading needed to keep up with the discussion was quite daunting, I was normally trying to fit it in with my usual daily routines, and it just became too much. Secondly, I got to wondering just how much money had been spent on this, and how much real use would be made of these forum discussions. I participated in a survey for an energy company, which asked about awareness of different things, and one of the things that struck me most forcibly was the proliferation of different agencies, all with the same end-agenda, but all with quite narrow focusses themselves, so there was a huge amount of duplication of effort, and hence waste. Thirdly, the discussion about Maori perspective just dismayed me - the last thing our health system needs is another layer of social workers, and bureaucrats, motivated by political correctness, attempting to deliver a service to a large group of people who aren't interested. This govt talks about how it has increased the health budget by $X, and yet real services don't seem to be improving at all, and the reason for this is that the middle management of the health system is expanding beyond reason. I'm afraid I see the attempted incorporation of culturally sensitive practices as just another example of job for the bureaucrats, that in the long run won't really improve the lot of the people it's supposedly desinged for.

RE:Summary
replyskinkcity:02/13/2008 02:57 PM NZST
hey there, I've pretty much said what I wanted regarding pgd I think. I find this quick new topic an interesting one as well though. Just as I talked about people against abortion having a knee jerk reaction to anything related, we also have a knee jerk reaction from people any time someone's opinion is described as having been influenced by their religion. I wholeheartedly agree with Dave_Kent's statements that religion is a part of who you are, just as is your ethnicity or your accent. Religion is one of the last few things society is apparently still allowed to mock, dismiss, and suck of all validity (being a latter day saint this is not something I have no experience of!). New Zealand is a young country, but surely is mature enough to be able to seriously consider all points of view, including those that are religious. When someone feels strongly about something, they are willing to stand out there and say it even if others don't like what they hear, and (unless the person saying it is the prime-minister and they're planning to change every law to suit their own view), it is either immaturity or insecurity that makes us feel angry or threatened by that strong feeling expressed, and go 'oh but they're pushing their religion, thats not a valid argument because that's not what 'everyone else' believes'. We're all human, so we're all chocca full of immaturity AND insecurity, and that's why we need democratic process and discussion. I think we've all done really well at saying our piece and leaving others the space to say theirs as well. In cheerleading terms, 'Go Us, Yay!' I would also like to aknowledge the Sams for their ability to reframe what WE say, and then ask the kind of questions that make you really think hard about things. Thanks.
I would like to ask you all to imagine both the happy AND thinking faces with me please............. I can only display 1.

RE:Questions
replySam:02/13/2008 02:57 PM NZST
Welcome back Megelli. So am I correct that you are saying that testing should be available so the parents can prepare themselves? As you say you would not terminate as a result of tests but does that mean you think other people should be restricted in their choices- or was that a personal view?
I agree with you that the issue is not abortion yet many people have focused on that.
Do you think people should have all the tests they want state funded or do you envisage (say) 2 state funded ultrasounds and if you want more you should pay for them yourself?

RE:Summary
replyBernice:02/13/2008 02:58 PM NZST
on the topic of perspectives I seem to find that the only perspective that gets discounted and rubbished in New Zealand is the Christian perspective(and perhaps Jewish). People would not dare to rubbish Buddhist, Moslem or any other Eastern religion, because it would be 'culturally insensitive'. I have found that Christianity is a most tolerant religion and perhaps because it has been around for a hundred years or so people feel they can be as rude as they like about it.
Whether I believe people are right in their perspective or not I believe they still have the right to HAVE their own viewpoint.
Sadly though if a Christian group presents independent research (ie not set up by themselves) even when it is correct, even when it is accepted in other countries (like USA) our government doesn't want to know.
It should not be acceptable to disallow or denigrate an opinion because it is faith-based, but it does seem to be so. As you say, rather than from some other ideology, I put it to you that perhaps that ideology, whilst it may have no God, is a religion its self.

RE:Sorry that the website has been down
replyBernice:02/13/2008 03:04 PM NZST
replying to Helen's comment about participants wanting to push their own viewpoint, I say that I thought that although we tried to put ourselves in other people's shoes, I believed that the council wanted to know what we personally thought, so of course we would push our viewpoint, we want to be truthful and say what we believed.

RE:Dropped out of forum
replyskinkcity:02/13/2008 03:06 PM NZST
I have to express a HUGE agreement with Debra on the middle-management thing, and would add that the amount of treaty lipservice out there is a giant problem, and sadly a lot of the government agencies are leading the way on that one. Incorporating culturally sensitive practises would actually be the ideal rather than the problem, because the _problem_ (does that mean underline?) is the culturally sensitive programmes are set up to be incorporated at the front line, and then ignored or run around in circles by beaurocratic processes. I too think creating new reasons for middle management and supervisors for the supervisors etc is a scary possibility with anything health or welfare related. Not something I'd want to see more of.

Nannying of society
commentDebra:02/13/2008 03:40 PM NZST
Another general point I'd like to make is about some of the proposals which seem to have an underlying assumption that people can't be trusted to do the right thing, and so we should force all would-be parents to participate in parenting classes. Who would set the agenda for those classes? Who would decide what would the 'correct' way of parenting and bringing up children? Do we really think that it would make a difference to anything? It's another way for the state to attempt to control our private sphere of influence, and needs to be resisted utterly.

RE:Nannying of society
replySam:02/13/2008 03:55 PM NZST
Hi Debra- welcome back. You do raise a good point- there is no one "right " way to raise a child- but I guess there certainly are wrong ways! I think people who suggest parenting classes are not trying to "nanny" others but are searching for an effective way to reduce the level of child abuse etc in the community. This is a valid concern even if this particular approach would have the problems you suggest. On a personal note it seems to me that we need a society where children generally are viewed as "treasures" for the want of a better word. That said I have found myself sighing when I get on a long haul flight and see small children seated near me. Perhaps a case of "do as I say not as I do".
Bernice- you are correct- at this stage we do want to know what you would recommend. Basically- what is the bottom line?

RE:Questions
replyMegelli:02/13/2008 04:09 PM NZST
Hi Sam
I think that if the person's maternity carer believes the testing is necessary (or reccommended) then it should be state funded. If the test is done soley by request of the parent then it should be privately funded. Yes, I think testing should be available so parents can prepare themselves, and get support and training (if necessary) on board before the birth of the baby.

RE:Nannying of society
replyskinkcity:02/13/2008 04:12 PM NZST
I think that basic parenting skills and anger management etc (for example) would be universal. I'm sure there are many of those aspects that everyone would agree as being the 'correct' way to parent. I don't think we should force all potential parents to take classes, but there are well studied risk factors for future parenting problems, and I see no reason why these people should not have access to government funded courses in some of these basic things. I imagine they'd be FAR more effective than the dopey antismacking legislation they've dumped on the police to enforce and FAR more effective than the current youth justice and truancy systems. Its easy to assume that parenting is common sense, and no matter which way you do it, you'll automatically know how to be a good parent, and that assumption is simply not true. Just look at the families of some of the youth coming through a justice residence and it is totally obvious. Even for those of us who like to think we're pretty good parents still have much to learn, I know I do. As far as pgd goes, the preceding has been rather outside the scope of discussion, but I think relative to pgd, access to courses, learning experiences, immersion experiences, that can show parents first hand the conditions they're testing for, and first hand the outcomes of the different decision options, would be extremely valuable.

RE:Nannying of society
replySam:02/13/2008 04:35 PM NZST
Thanks for that Skinkcity. There does seem to be widespread acceptance of the notion that parents making these decisions would be in a much more informed position if they had observed the lived experience of a family with a child who has that condition. However sometimes the time available to make the decision is very tight so perhaps some form of public campaign so that everyone is better informed is a more practical approach.
Well, this last day has been very valuable and I have been delighted that so many of you have come back with some concluding comments. The forum will remain open until 6pm tonight.
I would like to take this opportunity to thank you all on behalf of the Bioethics Council for the time effort and thought that you have put into this forum.
The Council will be producing a report and hopefully you will see your thoughts and values reflected in that along with those of the participants in the 18 face- to- face events and the two other online tables. The report will be presented to the Government.
Feedback on the process and the website is very valuable to us so we will email you all an evaluation form. We wopuld really appreciate it if you take the time to complete it as we want to improve and refine our processes.

lost people
commentsue:02/13/2008 05:27 PM NZST
hi all - i have still not got my ihug free connection by joining vodaphone landline so haven't been able to get on the net except a few short bursts
i agree with the pro life people mainly Dave_Kent and thank him for clearly saying many things i did not say
i hope that somehow the voice of those who care about the unborn,the marginalised and the genetically sick will get through to a few people who make these tests and consequences available

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