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

Transcript for Deliberation Group 1 - closed 5 December, 2007

RE:negatives of the TW approach.
replyKelly:11/28/2007 05:51 PM NZST
You've raised very valid points Nicci - and I agree that these are the real tensions surrounding this approach. As I've said, the collective vs the individual can ultimately cause dissention. I have cared for Maori who are dying, and witnessed some tense moments between family members as to 'who' makes the ultimate decision within the family to cease treatment. And pre-birth testing I can imagine would have parallels to this. And I agree too (as I've also said before), it's ultimately the parent(s) who will be caring for the child - however in Maoridom it is common to have the whanau collectively care for the child (and this I know, from my community work with Plunket). I suppose it's difficult (and unfair) to generalise, but I guess as we move into the 21st C, technology advances at such a phenomenal pace - whilst culture remains essentially the same. If individuals identify with the Maori culture, then we need to respect this and their decisions - as long as informed choices are available.

RE:Let's focus on Approach 3 for the moment
replymonique:11/28/2007 09:19 PM NZST
I struggled with this one. It seems to be quite a global and nebulous way to approach matters. When trying to understand such matters I try to unravel all the strands. I go straight in looking for the rules; the right and the wrong of things; the oppressor and the underdog. This approach seems to be almost a feeling. I don’t know much about the Tangata Whenua approach, but from some surface research of the concepts, it seemed to be referring to a positive balance between the individual and the community with the concept of reciprocal guardianship. Manaakitanga being a term to express love and the concepts of hospitality; I have read somewhere, ‘whereby the positive actions of the tutor, the mana of the student is elevated, and by the positive achievements of the student the mana of the tutor is elevated’ Kaitiakitanga being the concept of guardianship or the responsibility of people to other living things. I can glimpse how the Tangata Whenua approach works within this conceptual framework. There seems to be much to respect about this approach, and also room for some conflict as others have described. I wonder if any individual tensions/conflicts would arise from miscommunications and the usual family dynamics. The adoption of a non-customary legal system probably muddies individual cases up thoroughly. Especially if this approach refers to a way of feeling oneself forward within a community, rather than black and white standards, and rules from a separately formed legal system are used to arbitrate/settle conflict.

RE:Let's focus on Approach 3 for the moment
replyBrett:11/28/2007 10:20 PM NZST
Hi

Sam has very thoughtfully contacted me to ask if I had fallen off my roof :) I haven't and all is well. After I had replied to Sam I thought I should also post here.

I haven't posted lately because although I have been following the very interesting discussions, I have found that I have not a whole lot to say :)

As you may have noticed I have taken (deliberately) a fairly "zoomed out" view and, as is always the case, it is very difficult to translate such a point of view into a particular policy, and in
fact I am finding myself quite uncomfortable doing so. Hence the silence.

I'll chime in later probably.

PGD after the unexplained failure of IVF?
questionSam:11/28/2007 11:54 PM NZST
As I understand it, government-funded (?) PGD may be available "for non-familial chormosomal disorders if the woman is of advanced reproductive age or has had recurrent implantation failure or miscarriage". Nicci doubts whether this means PGD is available for women who have experienced unexplained IVF failure (see p.23).

Nicci has explained some of the benefits of making PGD available in cases of unexplained IVF failure. Can any of you shed light on eligibility and the current policy? What else could be valuable about this proposal? What might the costs, consequences and tensions be?

Please consider this at the same time as we work through the Tangata Whenua perspective.

Working towards collective recommendations
commentSam:11/28/2007 11:57 PM NZST
I’d like to give you a heads up on how Sam2 and I are proposing structure things as we work towards collective recommendations, starting on Friday. By then we will have some preliminary proposals for 3 of the approaches (2, 3, & 4). We’ll need to revisit Approach 1 – it should be relatively easy pull out possible actions.

With a comprehensive list of proposals, I think we should think about whether we can group/cluster and perhaps combine some proposals, and we should think strategically about which groups we want to focus our collective efforts on. What would be our (say) 5 key ‘messages’ to government? We could them work on each of these ‘messages’ in turn. My guess is that we might be able to develop about 5 key messages before close of play Tuesday.

A consequence of this approach is that some actions may not get developed. However, these proposals would still be in the public domain and be considered by the Bioethics Council.

Please let me know whether you have any issues with what we are proposing.

BY FRIDAY
Sam2 and I will review what’s been said so far and do our best to extract a list of proposals. However, some of you may prefer that the group takes greater ownership of this sort of content over the final days. Either way, Sam2 and I would certainly appreciate any help with pulling out possible proposals for the group to work on. If you have the time and energy, please email me – moderator@bioethics.org.nz – and we can coordinate or efforts.

RE:PGD after the unexplained failure of IVF?
replymonique:11/29/2007 09:29 AM NZST
I would support the use of PGD to assist in the IVF process, with a history of one unexplained IVF failure. I can imagine this would be a productive use of PGD. It would have the benefit of optimizing the IVF cycle and the resources of the health-care system. I can appreciate the example Nicci gave of the pressure couples must be under after one unexplained failed IVF attempt. A concern would be if it increased the number of discarded viable embryos. I can’t imagine that it would necessarily and perhaps ways of reducing discarded embryos via both IVF and PGD could be looked at in isolation, ie education of the public/ specifically IVF and PGD participants around the donor options available.

RE:PGD after the unexplained failure of IVF?
replynicci:11/29/2007 10:11 AM NZST
I have contacted Fertility Associates for some more information and may be able to share that with the group if it arrives in time.

TW Approach
commentnicci:11/29/2007 10:14 AM NZST
I've been thinking about this overnight. Take out the Treaty of Waitangi, and I find very little difference between "Life is a Gift" and "TW approach". I suspect that given the same set of circumstances, the outcomes would be very similar in both situations. The cultural pressures remain the imperative in both approaches, just with an altered set of driving forces.

Working towards collective recommendations
commentnicci:11/29/2007 10:15 AM NZST
Happy with this. Will try to participate in forming proposals, but doubt I realistically can - time to make our Sam'ses (Sam-ii?) earn their keep :))

The information from Fert Assoc's has arrived.
commentnicci:11/29/2007 10:42 AM NZST
I was going to paste it up as a weblink for people to access but I am uncomfortable with the anonymous viewers of this forum having access to it without clearing that with Fert Assoc's.

So I'm going to summarise. Essentially, the funding restrictions are the key issue. They state:

"Currently funding is available for around 8 cycles of PGD in total per year for the seven DHB areas covered by Fertility Associates Wellington".

I read that to mean that PGD will only be performed 8 times in the greater Wellington area (which goes up to Palmerston North in this case).

And further " For the common conditions (CF, Spinal Muscular Atrophy, Fragile X, Huntingdons, Myotonic Dystrophy and B-thalassaemia) the expected waiting time for testing is 3-6 months.

For other conditions we are told the wait could be approximately 12 months."

And, couples are also only eligible for PGD for two of their IVF cycles - that's if they get approved and last through the wait!

Based on that information, my analysis is that couples with unexplained IVF implantation failure haven't got a chance in hell of getting PGD regardless of how you interpret the HART Act.

Comments welcome.

RE:The information from Fert Assoc's has arrived.
replySam:11/29/2007 11:34 AM NZST
G'day every one,

This is a very particular issue and a bit different in that respect to what we've been discussing so far. However, we're still in deliberative mode rather that debate/advocacy mode. Further, this forum is about making public policy recommendations. That means we have to appreciate the particular/personal and the wider public context. This may not be an easy thing to do, especially if the issue affects you directly - that's why public deliberation is tough.

So let's consider what people who would support this proposal find valuable AND the costs, consequences and tensions of the proposal.

And don't forget, the TW prespective is on the table too ... more soon ...

SO FAR ON APPROACH 3: “TANAGATA WHENUA PERSPECTIVE”
summarySam:11/29/2007 12:00 PM NZST
WHAT PEOPLE WHO SUPPORT THIS APPROACH VALUE
* TW perspective can benefit all NZers e.g. the value Maori place on body parts has contributed to improved consent process and to better processes for being able to trace blood/tissue products
* locates the pre-born, mother, father in family/social relationships and sees the impact of the new life in this wider context
* holistically incorporates the mental, physical, family and spiritual dimensions
* looks at the implications of pre-birth testing for the current generation in relation to past and future generations
* values life as a treasure/taonga
* emphasise collective responsibility for children and allows a wider range of relatives to help raise the child
* values ongoing family/social support for children and parents
* a uniquely NZ way

COSTS AND CONSEQUENCES
* familial support usually more effective than that of social agencies
* ultimate responsibility for the child is less clear that current policy of mother / parents
* If decisions have to be made in the context of poor relationships between the mother, father and whanua, who has the ultimate say?
* may be implications for privacy – who has the rights to testing/medical information of the mother and pre-born?

TENSIONS/CONFLICTS
* Maori have diverse views & there is no such thing as the TW perspective
* collective responsibility for children is at odds with the dominant NZ cultural perspective in which parents are responsible for the child but have little control over the environment the child grows up in
* can be at odds with the “Nanny State”
* challenges privacy rights of the mother and pre-born

What actions would you like to take forward from Approach 3:
commentSam:11/29/2007 12:14 PM NZST
I'd like to invite you to propose actions to take forward.

Nicci thinks there's quite a bit of overlap with Approach 2: "Life is a Gift". The choicebook suggests the following actions:

* Involve iwi (tribe), hapû (subtribe) and Mâori organisations when developing policy and setting priorities with respect to pre-birth testing.
* Ensure that decisions about whether to have pre-birth testing – and what to do about test results – are made collectively by the whânau (family).
* Produce culturally-appropriate information about pre-birth testing, genetic counselling and care during pregnancy.
* Ensure that Mâori women know the importance of getting antenatal care early in pregnancy, including screening and testing.
*Ensure that Mâori genetic material is not retained or used for research without the informed consent of the appropriate collective.
*Ensure that Mâori genetic material is not retained or used for research without the informed consent of the individuals who provided the material.
* Require that ethics committees ensure that iwi, hapû and individuals are fully aware of the purposes, harms and benefits of a research proposal to use Mâori genetic materials before approving research proposals.

Please review these. What other values, cost/consequences, tensions/conflicts should we note? What actions would you suggest the group consider carrying forward?

I have lots to say...
commentnicci:11/29/2007 02:52 PM NZST
about similarities between the life is a gift/information/TW approach; about what I think are the benefits, costs, tensions and consequences of expanding the use of PGD as I have suggested; about commenting further on the TW approach; about what I would encourage this forum to do when choosing between generalities and specifics. But I have said a lot, and I think I am possibly the most 'talkative' poster so I will hold back and also I don't want to get the forum off focus.

But I am really keen to hear what others think and would love to see people's views on the TW approach and start some concrete discussion on the recommendations we may or may not support.

Look forward to hearing from you all. Maybe some of our posters who have visited once or twice might want to say more?

THAT COMMON GROUND …
commentSam:11/29/2007 11:08 PM NZST
Good morning everyone

You’ve been a wonderful group. Early on in the forum, I tried to describe what we would be trying to achieve: that we were hoping to 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. After nearly 3 weeks, I think each of us could probably make a good case for our least favoured approach and identify the 'negative' effects of our most favour one. So, in theory, we should be in a good position to search for common ground from which to make recommendations.

You’ve had a flavour of what working towards recommendations is like. The Sams have been thinking about how that’s gone to date and hope that your previous experiences and the process I outline on p.25 will help us work productively together.

I’ve been re-reading the forum from the start. There are so many great posts and it would be great if we can develop these into recommendations that would make a difference. Our recommendations will have more weight as a package if they are mutually reinforcing.

So here’s a list of possible recommendations that have been discussed to a certain extent so far.

APPROACH 4
1. Balanced, up-to-date, accessible medical information and advice that does not presuppose a decision
2. Establishment and government funding of patient advocates to meet with people who have had or are being offered PGD (and other pre-natal testing?) and give them support and information during their decision-making process.
3. Mothers/parent should have information about (access to?) support groups (perhaps NZ Carers)
4. Information about groups that can give cultural or spiritual advice
5. Information about the ethics of pre-birth testing include resources by writers, film directors, etc
6. Early community involvement in policy/decision making about future developments (e.g. PGD)
7. Government to help NGO support groups get better at supporting mothers/parents
8. Ensure that information (and policy) is developed not just by key stakeholders but more broadly with society. This sort of involvement will make it easier for mothers/parents to be supported in their decisions about pre-birth testing.

THAT COMMON GROUND ... (CONT'D)
commentSam:11/29/2007 11:10 PM NZST
APPROACH 2
9. Maintain the status quo on abortion but look to raise public discussion on why we have such a high rate relative to other countries
10. New Zealand has the right balance on PGD (except in relation to unexplained IVF failure???)
11. The decision on whether to terminate a foetus or embryo should lie with the woman/parents
12. Provide greater resources for parents of disabled children
13. Ensure all parents have access to an 'advocate' who can offer support, including information if the results of pre-birth testing confront parents with ultimate decisions
14. Ensure government undertakes public engagement to inform policy and decisions on human reproduction

APPROACHES 1 & 3 – no recommendations proposed

LET’S DO RECOMMENDATIONS IN RESPONSE TO APPROACH 1
commentSam:11/29/2007 11:15 PM NZST
After re-reading you posts for Approach 1, I realised that many of the proposed actions in the choicebook are about who decides. From your posts, most of you wouldn’t go for a libertarian approach, i.e. (almost) no government imposed limits. So instead of developing recommendations for ‘My choice, my right’, I think your recommendations are likely to be a response to what was proposed in the choicebook. I suggest we do recommendations from Approach 1 now as this will probably help us decide what we think the overall governance arrangements should be for pre-birth testing. We can then revisit Approach 3 before reviewing all the actions.

The choicebook proposes the following actions for Approach 1:
* 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

You might like to review our posts. Nicci gave us her take on each of these actions. There’s one of my closing summary of what valuable, the costs/consequences and tensions/conflicts for this approach (you can view ‘by summaries’ using the pull-down at the top right of your screen).

What would your first cut at recommendations look like in response to Approach 1 (and the other Approaches)?

Don't worry if the words aren't quite right or the ideas not fully formed. Let's hear your ideas and refine later. All half formed ideas (one of my specialities) welcome!

RE:LET’S DO RECOMMENDATIONS IN RESPONSE TO APPROACH 1
replyBen'80:11/30/2007 09:26 AM NZST
Here's my list of stuff to keep.
* 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

The others are all either too 'free-market' or fails to take account of people not being able to afford PGD.

RE:THAT COMMON GROUND …
replyBen'80:11/30/2007 09:32 AM NZST
Here's my approach 4 feedback
STUFF I LIKE/ RECOMMEND FROM APPROACH 4
1. Balanced, up-to-date, accessible medical information and advice that does not presuppose a decision
2. Establishment and government funding of patient advocates to meet with people who have had or are being offered PGD (and other pre-natal testing?) and give them support and information during their decision-making process.
3. Mothers/parent should have information about (access to?) support groups (perhaps NZ Carers)
4. Information about groups that can give cultural or spiritual advice
5. Information about the ethics of pre-birth testing include resources by writers, film directors, etc
6. Early community involvement in policy/decision making about future developments (e.g. PGD)
7. Government to help NGO support groups get better at supporting mothers/parents
8. Ensure that information (and policy) is developed not just by key stakeholders but more broadly with society. This sort of involvement will make it easier for mothers/parents to be supported in their decisions about pre-birth testing.

ie all of it seems cool

My list of keepers, with one alteration:
commentnicci:11/30/2007 09:36 AM NZST

* 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

CHANGE TO:

* let mothers/parents decide whether or not to use PGD for a viable IVF embryo that is being prepared for transfer.

(it is assumed that the embryo has already been vetted by embryologists and qualifies as a healthy, viable embryo, is already selected for transfer (so any others have been discarded or frozen) and it is the only embryo being transferred).

* 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

RE:THAT COMMON GROUND ... (CONT'D)
replyBen'80:11/30/2007 09:36 AM NZST
I like all of the Approach 2 recc's that you've listed Sam.

However there is one that I think is missing from the choice book which I really loved. It's the one that says (to paraphrase) "supportinf disabled poeple to reach their full potential in society".

That's very asperational & I feel important in terms of valueing people with disabilities. If we want to have disability not be a 'dis'ability, then that's something we should keep in our reccs.

My 2cents worth done :)

I may be able to look in again once more today.
commentnicci:11/30/2007 09:39 AM NZST
Otherwise that's it for me til Monday. Please keep in mind that if you form any sort of recommendation about specialised patient advocates to help with PGD decisions, that I would appreciate the concept being described as "government-funded patient advocates". There's quite a successful model operating like this in the hospital for lactaction consultants - it's a bit of a lateral leap to apply it to PGD, but I believe it is possible. Have a great weekend everyone if I don't catch you before then.

I'll do regular summary posts to help keep things tidy
commentSam:11/30/2007 10:09 AM NZST
Thanks Nicci and Ben'80 for you thoughts. I look forward to hearing more ...

Have a good w/end, Nicci.

Re: Approach 4
commentKelly:11/30/2007 01:05 PM NZST
Hey everyone. I really like Ben's comment re: wording of 'supporting disability to reach full potential' (for obvious reasons). By being strong re: putting practical infrastructure around this, then 50% of this statement will be realised (the other 50% lies in a paradigm shift on our views of all forms of disability - and I'm sure this will take a few more generations yet). I also really support that parents have as much information as possible. My husband and I were told of our daughter's condition amongst Geneticist's staring at her, given a photocopied page from a book from the 1980's and sent on our way (with no further support). In my mind that is appalling and disrespectful, and unfortunately still is occuring.

I'm a little confused re: funding for PGD still (and I've read and read..). But I am concerned re: families who are in the lower socioeconomic groups that are financially disadvantaged. I would feel very uncomfortable if only those with financial means could have this option - some of the most inspirational people I've met are those who are living with huge financial challenges. (Please correct me if I'm wrong).

On the whole, I agree with what's been formulated. I'll check in again when I have a little more time.

RE:THAT COMMON GROUND …
replyKelly:11/30/2007 02:25 PM NZST
Sam, I was just looking at the recs for approach 4 again. Could we put somewhere in amidst of the wording 'co-ordinated?' If we could possibly have some form of co-ordinated approach to replace the very 'bitsy' attempts of knowledge/information at present, we'd be providing our families with a very comprehensive and individualised approach. I really feel that a national database that families/health professionals/advocates could tap into (including governmental and non-governmental supports) would enable families to have access to a very holistic, knowledge delivery. And a 'power sharing' (as opposed to a 'power over' acknowledges that we all have valid knowledge). At present if you're lucky the specialist will link you with additional supports (but this doesn't happen necessarily). And not all families feel able to reach out in times of crisis - it's more often a disempowering moment of your life.

What would you say the rules should be?
commentSam:11/30/2007 02:25 PM NZST
So far, Nicci, Ben'80 and Kelly, seem basically happy with the choicebook actions for Approach 1 in relation to:

* mothers/parents deciding on sceening/testing during pregnancy
* mothers/parents deciding on abortions

However, my reading is that you would not be happy with mothers/parents deciding in an information vacuum. Approach 1 isn't concerned with information or informed consent. So you might like to propose an alternative, say , 'mothers decide as long as their decision is informed by ...'

Policies/rules on "who should ultimately decide PGD/pre-natal screening and testing and under what conditions" and "if not user pays, what funding system would be appropriate", will have to be decided, so I'm hoping you can develop a 'new' approach on the back of the Approach 1 proposals.

Re PGD, Nicci, I'm pretty certain that the usual practice is to autopsy as many 'good' looking embryos as there are before deciding which to transfer. Can anyone confirm this?

So far, I haven't hear too much about what you are thinking in terms of who decides/funding/limits re PGD. The proposal in the choice book is extremely free and not just in terms of who pays. It would allow mothers/parent to select whatever they want (e.g. deafness, eye colour, sex, saviour sibling).

Of course, many of the things that PGD could be used for could also be done using pre-natal screening if mothers/parents were prepared terminate (e.g. sex selection in places like India). My reading is that most of you would prefer limits. What would they be?

I hope my post is understandable. Brett's post of 11/20/2007 (yes, US date conventions!) is probably clearer.

Let's not rush this. It's too important for that.

RE:THAT COMMON GROUND …
replySam:11/30/2007 02:31 PM NZST
Hi Kelly, I'd be very happy if you came up with a better proposal for Approach 4 rec for the group to consider. Sam

RE:THAT COMMON GROUND …
replyKelly:12/01/2007 10:18 AM NZST
Apologies everyone - when I wrote re: 'bitsy' information, I was referring to what is currently offerred to parents in the real world, not what we as a group have come up with. Sorry if this was not clear.

I love what has been offerred already, and just really would like the term 'co-ordinated' to be in the print. I'm probably coming across as pedantic, but text/discourse is so powerful. So, therefore a more co-ordinated approach (perhaps utilising an open database with all support services/info for all to access) would enable families to 'tap into' a wider amount of knowledge. And the use of an advocate who was skilled at presenting all the viewpoints in an objective way would encapsulate my ideal.

I'm still thinking/pondering over the other recs. I'll be back later....

RE:LET’S DO RECOMMENDATIONS IN RESPONSE TO APPROACH 1
replymonique:12/01/2007 12:18 PM NZST
I haven't had my say on Approach one yet. heres my take .
* remove all restrictions on PGD. - No I think the government currently has the right balance. as long as our society becomes more receptive to living with disability that is compatible with a degree of quality of life)(sorry how long is a piece of string comment there, but I am sure constant analysis of this would throw up some parameters)
* 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 - I worry about the large number of embryos disposed of, but I'll come back to this in another post.
* let mothers/parents decide whether or not to have screening and testing during pregnancy - . Yes, as long as we can employ other means to get rid of the seek and destroy mentality around some syndromes such as Down. But we cater for that, i guess with the knowledge approach, and the life is a gift approach.

RE:LET’S DO RECOMMENDATIONS IN RESPONSE TO APPROACH 1
replymonique:12/01/2007 12:21 PM NZST
* let mothers/parents decide whether or not to continue or terminate a pregnancy - (Yes as at present, but within limits /parameters put in place and regularly reviewed by an ethical committee such as the bioethics council, in regular consultation with the public, (specifying the regularity, ie 5 yearly), as scientific and medical developments move so fast these days) personally I would recommend replacing the current Abortion Supervisory Committee with some kind of ethical committee, that would review the beliefs of all New Zealanders. At the moment, politicians tend to try and stack the committee with people that blatantly reflect their pro-life/ pro-choice beliefs. Nothing productive ever gets done, ie, trying to review ways of reducing the abortion rate ,without trampling on anyones rights, ie with enhanced sex education to teenager etc. I can fully empathize where parents have to make the decision around whether terminating a pregnancy would be the best thing for their unborn child, but I believe that where we are at the moment, the rights of the pre-born have fallen by the wayside somewhat, and abortion, may have become a convenience option. I would support this assertion, with the fact that we do have one of the highest abortion rates in the world. To me we are not in any danger of going back to the bad old days where women were second class citizens and baby factories, but we are in danger of not catering for the rights of the embryo to life, and this may need a societal change in thinking about contraception and teenagers, and education around the responsibilities of those in their early 20’s.

RE:LET’S DO RECOMMENDATIONS IN RESPONSE TO APPROACH 1
replySam:12/01/2007 03:21 PM NZST
Thank you both for adding your recommendations to the forum. I like the way you are drawing together aspects of the other approaches and making things seem more coherent.

I'd like to know if others in the group have any thoughts about the sorts of regulatory institutions we have and how they currently relate to the public, new technologies, changing values, etc. Would anyone like to say anything about Monique's suggestions?

Re: Approach 1
commentKelly:12/01/2007 04:54 PM NZST
Monique brings up some food for thought. I agree with you that there needs to be a societal change re: contraception and sex education. I think this needs to be addressed much earlier in the lifespan - around the 'tweeny' years (i.e. 10-13yrs). I know this sounds very early, but children these days seem to developing and experimenting at such a young age (and I have visited many very young mothers through Plunket - one 14yrs). I too feel uneasy re: embryo disposal. However at the 18wk scan, if an abnormality (usually very severe) is indicated then a medical termination is granted. So whether parents decide to discard imperfect embryos prior to implantation, or terminate at 18wks or beyond - the end result is the same. But the shades of grey still permeate. How do you know if your child will be affected mildly or profoundly? A very difficult decision to make when you are feeling so at odds. Therefore the importance of an informed decision is paramount.

Again, PGD needs to be available for all - not just the financially elite.

And the government has some good guidelines in place. I would not feel comfortable with parents solely having 100% say - we still need some form of structure that is reviewed regularly (as Monique says research/technology/values are dynamic). Once all the information has been given, then the parents in conjunction with specialists and other supports can make the decision that is the 'best' for them. And knowing friends who have been through this experience recently, their decision was heartwrenching (and they proceeded with their pregnancy).

RE:Re: Approach 1
replySam:12/01/2007 09:16 PM NZST
In my experience, young kids are pretty interested in how babies are made. My 5 year old has been asking about how the 'seed' gets inside a mum. When we explained it he said "I don't want to be a grown up, I don't want to get married, I don't want to do THAT STUFF!"

RE:THAT COMMON GROUND …
replySam:12/01/2007 09:29 PM NZST
Kelly, I'm sure we can get the idea of a "co-ordinated approach" into our recommendations but we'll need to first get an idea of what a more co-ordinated approach would look like. What would it look like for a parent/family? from the point of view of govt? for medical institutions? for NGOs? For the 'advocate' idea, Nicci suggested a model similar to a hospital lactaction consultant. Are there any models you think could help with coordination? Is there something that's already pretty good that could be built on? What things need to get sorted out most urgently?

RE:THAT COMMON GROUND …
replyKelly:12/02/2007 09:24 AM NZST
Yes I understand the 'co-ordinated approach' seems a little difficult to grasp. Here's my take:

When parents are undergoing pre-birth testing, their specialist that they are under the care of is 'responsible' for ensuring parents have all available information. Pre-birth testing techniques are generally catered for, it's if in the event something untoward is detected that it all goes haywire.

If a result from an amnio/PGD/ultrasound, etc detects an abnormality, then ideally a specialist could then access a central database. A central database could have a team of co-ordinators that ensure that every known support/information/research centre, etc is loaded into it. In this way, if the child has been diagnosed as having a rare disorder (like my daughter), then overseas information could be tapped into - in order to gain a better understanding of the disorder. Social workers used to work as co-ordinators for families (i.e. link them with all known services), and this system is not really in use anymore. So families now flounder away themselves trying to access info. when it could all be done in a systematic and efficient manner (with someone to help decifer through the info). Family advocates could then be accessed (if parents wished) once the info. was processed, and the families (along with the specialists) could arrive at their decision to terminate or proceed with the pregnancy.

Does this help? I'm quite a practical person, and in talking with other families (some of whom have wrestled with termination) the above example would be a huge improvement.

RE:THAT COMMON GROUND …
replyKelly:12/02/2007 09:47 AM NZST
Oh, just wanted to add another blurb. In my experience in the health profession, and in the disability sector - families are kept very much in the dark re: help/support/services. In general, NZ needs to improve this markedly. A lot of agencies do not network with other agencies (hence my remark re: 'bitsy' info). It's actually been my daughter's psychologist who has put us in touch with services that we've been eligible for years, and nobody has told us about it. And I am a reasonably assertive person, and I worry about other families who feel less able to 'shout' - something that I still don't like to do, but occassionally am forced to.

If we become more co-ordinated and put the child and their family in the centre of all of this, then we're working 'for' the family (and society in general).

RE:THAT COMMON GROUND …
replymonique:12/02/2007 10:47 AM NZST
This sounds similar to the process for stroke rehabilitation. Each individual at a stroke rehab hospital is under a 'team, including a consultant/specialist, a physio, occupational therapist, et al, There is generally a social worker involved, who was in my case our primary liason. Each specialist discharges the individual, as goals are met. The social worker was the most useful in providing links to outside agencies, such as the Stroke Foundation, information about mobility access and taxi chits etc etc .So similar working models are in place, perhaps they could be adopted to PGD, and any pre-birth scanning situation where abnormalities are present. I too know someone close, who terminated following severe abnormalities, and I don’t think the system was very supportive.

RE:THAT COMMON GROUND …
replySam:12/02/2007 11:27 AM NZST
So, am I right in saying that this coordinated approach would include:

*someone as part of the medical/support team to help mothers/parents with finding information (medical; support available to help them care for a child or to help them make decisions; cultural/ethical/spiritual) and understanding it.

*some kind of centralised information centre where parents can find information appropriate to their needs.

Some of you have already noted that the govt needs to "share the power" more and help support groups help the community. Re the medical information, a lot must exist in the world. Are there already accessible places where parents can look - maybe something like wikipedia where the community itself tailors the information, decides what is needed, interpretes scientific data, updates the information. What govt actions would most effectively help with coordination?

Connecting Approach 3
questionSam:12/02/2007 11:28 AM NZST
Any thoughts on recommendations that might come from the Tanagata Whenua perspective?

RE:THAT COMMON GROUND …
replyKelly:12/02/2007 11:43 AM NZST
Hi Sam - the recs for the coordinated approach sound great. And Monique's comment re: stroke rehab generally works well. I worked (many years ago) in a rehab unit in Auckland for people recovering from head and spinal injuries and I was a 'Primary Nurse' - the coordinator to ensure all health disciplines were working 'for' the individual and their family. It works incredibly well - but only if it's coordinated properly.

Already in the community there are many support services (e.g. Parent 2 Parent, Epilsepy Foundation, etc). But as far as I know, there is nothing that quite ties it all in together for this particular issue. From my (and other's) experience the medical team deal with the medical 'stuff', the community organisations deal with the 'community' stuff and the interception between the two can sometimes be very messy.

For e.g. my daughter has an array of 'specialists' (including WINZ, Needs Assessment agencies, Special Ed Services, Paediatrician, etc). All of whom do not really communicate between each other. So, I become the advocate/coordinator/supporter/educator (the list goes on). Most families dealing with these issues don't think twice about it - it becomes 'normal'. But I disagree - coordination of services need to improve in order to support families through the lifespan. And it begins at conception.

RE:THAT COMMON GROUND …
replymonique:12/02/2007 01:31 PM NZST
There is Healthline, the phone line, for general health inquiries, though I prefer to ring Plunketline for childrens matters, perhaps the government could set up a health wiki, that could act as a gateway, to support/caring groups, and act as a medical database. I've attached a link to the NIH, the American national database. I'm not sure what proportion, is medical research, and what proportion is useful resources/links for the public.

Suggested Link:http://bioethics.od.nih.gov/

RE:THAT COMMON GROUND …
replyKelly:12/02/2007 02:18 PM NZST
Below is a link to NZ's main support group for families who are raising children with medical/intellectual difficulties, etc. They have regional groups, so families get local info as well as national. Parent 2 Parent have launched their new video conferencing tool; which would be an ideal way to disseminate info between families (specialists have been doing this for years). This organisation also provides local agency contact details, regular meetings, sibling camps and support, etc.

Suggested Link:http://www.parent2parent.org.nz

RE:THAT COMMON GROUND …
replyKelly:12/02/2007 04:17 PM NZST
Here's another link that is relatively new. I've just checked out the website and it's well worth a look. It's just the kind of coordinated approach that would work. The autism website is a database of service providers (e.g. psychologists and allied health professionals), meetings, along with advisors (via an 0800 number) to help you navigate your way through the info and support. It's been put together in partnership with Parent 2 Parent. Kind of like a 'one stop shop'.

Suggested Link:http://www.altogetherautism.org.nz

Where are we up to?
questionSam:12/02/2007 11:18 PM NZST
Over the weekend, Kelly and Monique developed their thinking (and mine!) especially in response to Approaches 1 and 4. Several new recommendations have been proposed.

I'd like you to review these and let the group know whether or not you support the proposals in part or in whole (summarised below)? Would you like to suggest any changes or new proposals?

Do you want to suggest any recommendations in relations to Approach 3. How could these relate to the other recommendations?

With just Monday and Tuesday left, I don't think we can afford to explore, say, the bioethical conudrums around 'saviour siblings' or using PGD to select for 'disability' (eg deaf parents wanting a deaf child). So I would suggest you review all the recommendations we have. Which recommendations would you combine? Are there mutually reinforcing recommendations you'd like to put forward as our major recommendations?

Another way of coming at this may be think about what what you would say to the Minister of Health if you could make just 5 points. What would be your key messages?

The last day of our forum will be Wednesday. I'd like to use that day to reflect on what we've done and give you the opportunity to ask questions. More on that later.

Consolidated recommendations as they stand ...
summarySam:12/02/2007 11:20 PM NZST
APPROACH 4
1. Balanced, up-to-date, accessible medical information and advice that does not pre-suppose a decision
2. Establishment of government-funding patient advocates to meet with people who have had or are being offered PGD (and other pre-natal testing?) and give them support and information during their decision-making process. Could be modelled on hospital lactation consultants.
3. Mothers/parent should have information about (access to?) support groups (perhaps NZ Carers)
4. Information about groups that can give cultural or spiritual advice
5. Information about the ethics of pre-birth testing include resources by writers, film directors, etc
6. Early community involvement in policy/decision making about future developments (e.g. PGD)
7. Government to help NGO support groups get better at supporting mothers/parents
8. Ensure that information (and policy) is developed not just by key stakeholders but more broadly with society. This sort of involvement will make it easier for mothers/parents to be supported in their decisions about pre-birth testing.

APPROACH 2
9. Maintain the status quo on abortion but look to raise public discussion on why we have such a high rate relative to other countries
10. New Zealand has the right balance on PGD (except in relation to unexplained IVF failure???)
11. The decision on whether to terminate a foetus or embryo should lie with the woman/parents
12. Provide greater resources for parents of disabled children
13. Ensure all parents have access to an 'advocate' who can offer support, including information if the results of pre-birth testing confront parents with ultimate decisions
14. Ensure government undertakes public engagement to inform policy and decisions on human reproduction
15. Provide the infrastructure so that disabled people can participate fully in our society (Choicebook wording). However, at least half the challenge involves a societal paradigm/attitudinal shift on all forms of disability, which would several generations

CCNSOLIDATED RECOMMENDATIONS (cont'd)
summarySam:12/02/2007 11:23 PM NZST
(IN RESPONSE TO) APPROACH 1
16. ‘remove all restrictions on PGD’
No, the government currently has the right balance in terms of rules. These need to be regularly reviewed.
17. ‘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’(+)
No, the government currently has the right balance’
(+ subject to confirmation that PGD is conducted on multiple embryos to improve the chances that the ‘best’ one(s) are chosen from transfer)

18. ‘let mothers/parents decide whether or not to have screening and testing during pregnancy’
As long as we can employ other means to get rid of the seek and destroy mentality around some syndromes such as Down with the knowledge approach, and the life is a gift approach.

19. ‘let mothers/parents decide whether or not to continue or terminate a pregnancy’
Yes, as at present, but within limits /parameters put in place and regularly reviewed (5 yearly?) by an ethical committee such as the bioethics council, in regular consultation with the public, as scientific and medical developments move so fast these days

20. require people to pay for any testing themselves
No, would be unfair - these technologies (especially PGD, which is expensive) should be broadly available

CONSOLIDATED RECOMMENDATIONS (cont'd) - NEW PROPOSALS
summarySam:12/02/2007 11:24 PM NZST

21. ‘Replace the current Abortion Supervisory Committee with some kind of ethical committee, that would review the beliefs of all New Zealanders.’

22. 'Education about sex and contraception to start earlier in schools (age 10-13)’

23. ‘Someone as part of the medical/support team to help mothers/parents with finding information (medical; support available to help them care for a child or to help them make decisions, including contacts for different govt and NGO agencies; cultural/ethical/spiritual) and understanding it.’
Like a social worker or ‘Primary Nurse’

24. ‘A centralised information centre where parents can find information appropriate to their needs’
Perhaps a health wiki, that could act as a gateway, to support/caring groups, and act as a medical database. Other models could be http://www.parent2parent.org.nz, http://www.altogetherautism.org.nz; http://bioethics.od.nih.gov/

25. ‘More co-ordination between all the different parties (doctors, nurses, psychologists, disability services, WINZ, etc)’
Already in the community there are many support services (e.g. Parent 2 Parent, Epilsepy Foundation, etc). But as far as I know, there is nothing that quite ties it all in together for this particular issue. From my (and other's) experience the medical team deal with the medical 'stuff', the community organisations deal with the 'community' stuff and the interception between the two can sometimes be very messy.

NO RECOMMENDATIONS FOR APPROACH 3

RE:CONSOLIDATED RECOMMENDATIONS (cont'd) - NEW PROPOSALS
replyKelly:12/03/2007 07:54 AM NZST
It's all looking pretty good. Some really practical recs. - which is awesome. I'm away today, but will return tonite to contribute to Approach 3.

RE:CONSOLIDATED RECOMMENDATIONS (cont'd) - NEW PROPOSALS
replymonique:12/03/2007 04:48 PM NZST
Hi.

I support these consolidated recommendations in whole.

Recs for Approach 3
commentKelly:12/03/2007 11:17 PM NZST
I was looking through the choicebook again for Approach 3, and don't think that I can add too much more. Essentially, it embodies a lot of how I feel re: this subject anyway (and the messages are ones pretty much of universal respect, irrespective of culture/ethnicity).

However, I would like to reiterate that I would like PGD, and all form of pre-birth testing available for all (not just those with the financial means). In healthcare, Maori do still tend to be a disproportioned group who access services. And there is much debate and research out there that argues why this is so. But, I generally believe that if Maori are on-board with all forms of pre-birth testing, then they can decide how appropriately it can be delivered and managed (so more Maori women and their whanau can participate, whether it is in a clinical or community setting). For me, it's all about maintaining individuality - catering to the person(s) needs.

And if I was to prioritise the key points of pre-birth testing to govt, it would entail:
(a) More informed consent - the 'real' kind of info/knowledge from a range of specialties/services
(b) More coordination - from every group that will affect the child and their family
(c) More public deliberation - isn't that what living in a democratic society is supposed to entail?
(d) More knowledge/power sharing - through coordination of services and a holistic approach
(e) And a healthy cash injection!!! (here is my humour coming through....)

RE:Recs for Approach 3
replySam:12/04/2007 09:19 AM NZST
Kelly, I wish you could bang this virtual table for effect - especially at (e), the healthy cash injection. I couldn't stop chuckling and can hear the cry, 'what would you give up?'

RE:Recs for Approach 3
replyKelly:12/04/2007 09:26 AM NZST
I have just banged the table to make me feel better!!! Unfortunately we all know that money is essential to get anything new up and running, and keep existing services in play. It's worth a crack isn't it? And as many of NZ's support services are run on the smell of an oily rag (i.e. in the form of volunteers), then why not give a little back to those services in the form of financial compensation? There's enough passionate and caring people who would be more than interested in initiating positive change, so why can't be support them financially? (after all, society in general would benefit greatly).

Reflections on your experience of this forum
questionSam:12/04/2007 04:07 PM NZST
For me, the forum has been a great experience. I'd now like to invite you to reflect on what we've done over the last three weeks. What have you liked best? What things could have been done better?

The Bioethics Council is actively trying to develop deliberative processes and builds evaluation into its work. An evaluation questionnaire will be emailed to you shortly. I know the Council would value any feedback you give.

I'd also be happy to reverse roles and take any questions you might have. Fire away ... I'll post answers tomorrow.

And please feel free to comment on any of the recommendations or key meassages.

RE:Consolidated recommendations as they stand ...
replyMarilyn:12/04/2007 05:51 PM NZST
so sorry I haven't been able to keep up - a sudden overload of work. I like most of the consolidated recommendations except for the ones around abortion and sex education simply because they are outside this review (I think) which is considering something different from abortion per se. Abortion as a late contraceptive is not what we're discussing, - whether one person does or does not have a baby is unlikely to impact on the whole of society, but where specific characteristics are 'bred' out and/or seen as undesireable will have a huge and long lasting impact. for that reason as well I would recommend, even though i have loved this discussion, far broader public involvement. I think the issues we've raised here could easily be discussed in a television and radio forum, we could have essay competitions and plays and art works etc. we could involve the health and education sectors and bodies like the Royal Society of NZ. The bioethics commettee brought out Stephen Rose last year and commissioned him ot do a 20 year projection of where he thought neurological science would be taking us. it was a fascinating paper (and it was publically available( but I felt very frustrated that there was so little public debate around the document and that his visit was 'wasted' in terms of really raising the public profile. I know it is is sacrilege but I think we ought to be using advertising, entertainment and communications people more extensively in getting the issues out there and discussed. Even this forum only just raises the issues - it is not long enough for us to arrive meanigfully at any deeply held conviction - taking time to fully explore personal feelings and responses is more productive and satisfying inthe end. Public debate doesn't have to be about solving problems with regulation and legislation; it should really be about enabling people to make good decisions which they will be happy with for hopefully the rest of their lives. That takes time and discussion and lots of thinking which really means bringing it into people's daily lives whether by way of drama, debate, posters, questiooonnaires etc. In one sense this isn't rocket scinece -there is not going to be any extreme political decision, the information is out there it just needs to made available in a variety of forms. anyway, many thanks for the opportunity to participate and I have enjoyed and feel privileged to have shared your thoughts. thanks too to Sams 1 & 2!

Hi everyone
commentnicci:12/04/2007 06:53 PM NZST
I'm sorry I faded away at one of the more important times of this forum - but I was busy creating wonderful memories for our family as we celebrated two very special birthdays.

I've read through the recommendations and it frustrates me that the constraints of this forum make it really really hard to nail down some detail. I feel like we've made broad overarching suggestions that frankly, almost anyone looking at the issues would support.

But that's not to say that I think the last three weeks have been a waste of time. Far from it, I have loved the dialogue and discussion. But Marilyn has summed it up nicely for me (thanks Marilyn) - "Even this forum only just raises the issues - it is not long enough for us to arrive meaningfully at any deeply held conviction - taking time to fully explore personal feelings and responses is more productive and satisfying in the end".

I feel like I've gone to a concert and left just after the warm-up act and before the main performance - it would be great to do more work on this somehow.

That said, I continue to support the two specific recommendations that I would like to see implemented, and which are listed above:

The provision of government-funded parent (or parent-to-be) advocates who can provide information, support and empathy for those facing PGD choices.

And, increasing current funding for PGD to include PGD in cases of IVF pregnancy failure.

It strikes me that the vast number of issues we raised (saviour siblings etc) will not be a realistic ethical problem in society for years, or decades - as PGD is simply not an available technology yet - eg. only allowed to be used 8 times in lower NI per year. Of course, that doesn't stop our consideration of it - but it seems one of the things we all agreed on was to do with parents having information, support, clinical evaluation to ensure PGD is used responsibly and so on. To a large extent, this already occurs when IVF is used. It is a smaller step to extend PGD use in IVF than to debate it's role in the whole of society.

I think if we strongly endorsed more use of PGD with IVF then we would get some really good data on medical, emotional, cultural and other issues associated with the use of PGD that would help put PGD into a society-wide model when the time is right.

Sam and Son of Sam
commentnicci:12/04/2007 07:01 PM NZST
Thank you for your moderation, help, clarification, encouragement and patience.
My suggestions are mainly to do with the software - I think you have all of them.

My questions are:
- Are either of you trained in moderation or do you both work in the Bioethics area and volunteered for this?
- Where to next for the deliberative dialogue?
- What will happen to the recommendations here?
- What form of ongoing contact, if any, will we have regarding our recommendations?
- Will we be notified when new dialogue forums start so we can drop in if we want to and observe?
- Has it been possible to find out whether the forum has attracted much in the way of anonymous traffic?
and finally: What do you guys think? What are your views on PGD?

To all my co-contributors, thanks for your postings, support for many ideas and suggestions I made, and giving me much to think about when you informed me of your personal issues. My view hasn't changed all that much, but now I feel more confident about expressing it after the in-depth consideration we have participated in.

Merry Christmas everyone!

Thanks for the opportunity
commentKelly:12/04/2007 09:30 PM NZST
Hey everyone. I have enjoyed this experience - thought provoking, funny, sad and extremely worthwhile. And I agree, we could have gone on and on for weeks - but everything has its time.

Thanks to the Sams for keeping us on track. And I must ask too - where to now? Like Nikki, will we hear about the outcomes of all of this? And for the Sams, what are your next moves? What's in your future?

I just wanted to end my time here with a link found below. Rick Guidotti is an international photographer who has set up an organisation photographing individuals with 'difference/disability' in order to challenge our perceptions re: difference. My daughter's photo was on this website - and I often looked at her image and was reminded about her individuality (just like mine and yours). Life is precious and sometimes very short - go forth and seize the day (live in the moment). Kelly xx

Suggested Link:http://www.positiveexposure.org

The Samses haven't disappeared
commentSam:12/05/2007 12:31 PM NZST
Hi everyone

Thanks for you thoughts and questions (and beautiful pictures, Kelly) and for your contributions over the last three weeks. The Samses really appreciate the way you have interrelated, how the group has gelled, how you have supported each other and us ... especially given your other commitments (including special family celebrations and work overload).

I'll start responding to your comments and questions soon. Sam2 wants to too - he's at an in-person event today and will post later this afternoon. We'd be more than happy to enter into further discussion.

I'll be back ...

Part 1: Scope of pre-birth testing report + sustained dialogue in the community
commentSam:12/05/2007 02:03 PM NZST
Marilyn, Nicci and Kelly, together you’ve raised some of the ‘big questions’ about “broader public involvement” not just in terms of government policy and decision making but also for people living their everyday lives – what sort of communities do we want to live in? How can we make better social worlds?

The Bioethics Council was set up to provide accessible information, to promote and participant in public dialogue, and to advise the government on the cultural, ethical and spiritual raised by biotechnology on that basis. It’s quite an unusual government organisation in that it is independent and reports directly to Ministers. A consequence of a dialogic approach is that the scope is defined with the participants of the dialogue, not just by the sponsors.

In its past reports, the Council has attempted to faithful report to government what it heard from the community – so, Marilyn, I would expect the Council’s report to include what’s been said about abortion and sex education (possibly written in different words). I don’t know how the Council will respond to all the things it has heard in the 18 in-person events and the 4 on-line groups (yes, enough people have signed up for 3 more in-line groups. One started yesterday and 2 will start on 22 January. You can observe using the anonymous observer option.)

Part 2: Sustained dialogue and 'upstream' public engagement
commentSam:12/05/2007 02:25 PM NZST
The Council was formed 5 years ago and has demonstrated a commitment to dialogue, deliberation and engaging with the public. I agree with you, Marilyn, that to do this properly is not just a matter of processes and rounding up a few people. Of course it’s about “essay competitions*, … advertising*, entertainment and communications* people … [and] drama, debate*, posters,” and working with other institutions (e.g. the Royal Society*). However, the Council a tiny part of government (4 full time staff including the Samses) and cannot hope to support on-going, sustained dialogue by itself. We are, however, exposing lots of people and institutions to processes like the one we’re currently using. If you think these processes can ‘add value’, you may be in a position to influence things - the good news is that many of these processes were developed by people like you for people like you. We have truckloads of resources to share. [* = we do]

Nicci, you made a comment about “PGD not being a realistic ethical problem in society your years, or decades”. You could also say that about GM in NZ – there’s not much of it is here!

One of the contexts for the Council’s dialogue mandate was the 2000 report of the House of Lords Select Committee on Science and Technology which said that the culture of policymaking needed to change “so that it becomes normal to bring science and the public into dialogue about new developments at an early stage”. This sort of approach gives society a change to influence not only policies and regulations but also the ways in which technologies are developed. Of course, there are difficulties with involving members of the public on things they have little experience of! I can point you to more on this if any of you are interested.

The recommendations stage
commentSam:12/05/2007 03:53 PM NZST
Nicci, personally I found this the most difficult stage of the process. I felt the approaches in the choicebook had given us a firm structure for exploring the complexity of the issues. However, we didn't have that for the recommendations stage. I’ve been thinking about how we could have done this better – should I have taken a stronger lead and put up my analysis of where the group was at? That said, I think you, Monique, Kelly and Ben came up lots of good stuff – certainly some recommendations I would not have thought of. For the framing we had, I'm not sure it would have been realistic to get into much more detail than we did.

I was also acutely aware that you had all be working really hard for 2 and a half weeks - so I was wondering how much energy people had left. To me it would have been much easier to do the recommendations at a real workshop. We could have identified relatively quickly where the group wanted to go ... so I’d appreciate any thought or ideas about how the Samses could approach this stage for the next on-line forum.

RE:The recommendations stage
replyKelly:12/05/2007 04:10 PM NZST
Hey Sam(s) - I agree the 'online' approach is difficult. I attended the full one day initial deliberation process, and have always found face-to-face conversation easier. But having said that, online communication fits around people's busy lives very nicely.

I don't quite know how it could have been done any better - I guess it depends on where the participants take you (with regards to their thoughts/comments). But I know from the one day forum, it was very intense (because we only had a day to talk and formulate ideas) - and as such the moderator keep 'cracking the whip' to keep us on schedule (and it could have really run over a couple of days). The variables of everybody working, inbetween commenting on this forum makes for disjointed conversation anyway. Nevertheless, it's a great step in the right direction.

RE:The recommendations stage
replySam:12/05/2007 04:20 PM NZST
Thanks for your thoughts, Kelly. I think you're right in that there's no right/best way for everybody. I'd have to say though that despite its limitations (no body language, lack of continuity, uneven participation), I think our exploration actually rivalled (and perhaps even bettered) the 3-hour, round 2, in-person events. The on-line environment does give people a chance to think things over in their own ways, in their own time. I'm sure this contributed to my lack of sleep over the course of the forum!

RE:The recommendations stage
replyKelly:12/05/2007 04:32 PM NZST
Very true! I don't quite know how this could have been done in 3 hours. Critical reflection requires time, and this online approach has given us all that.

Now get some sleep tonite.....

Other questions
commentSam:12/05/2007 04:44 PM NZST
Both the Samses have been on courses about the theory and practice of the deliberative process we used for this project, about facilitation in general and about on-line moderation in particular. That said, we don’t get to do on-line moderation every day. We also work in the bioethics area.

For the pre-birth testing dialogue, the in-person events finish tomorrow and the on-line tables will finish in February. For the Council, the next stage will be reviewing all the things that it has heard and working out how it's going to present that and what it wants to say. The Council plans to present a report to government in about April 2008. The report is likely to include a section on the process, including the results of the evaluation (we'll email you a questionnaire soon). You will all receive a copy of the report.

The TradeMe ads for this website seem to have been very effective. The number of completed choicebooks has trebled and the forum tables are full (Table 2 started yesterday, Tables 3 & 4 start 22 January). People are posting their stories and ideas in the shared area. Please do keep an ‘eye’ on what’s being said.

On PGD and pre-birth testing, I know I’m highly conflicted and I’m glad you have been working through the issues on my behalf! Perhaps one of you can help me work though the issues once the Council has delivered its report. I hope very much to stay in contact with you all. It’s been a rare privilege.

I wish you all a happy festive season,
Sam1

RE:Thanks for the opportunity
replyMarilyn:12/05/2007 06:03 PM NZST
What a beautiful collection of photgraphs - thanks Kelly. I dont knw which isyour daughter but they are all extraordinarily beautiful and unique as we all are.

just one last suggestion for the online debates - why not use the KAREN network to have 'face to face' conferenceing which involves many more people and is a lot more environmentally friendly! Easy to incorporate real stories with real people telling them too. Take care everyone and have a peaceful and starfilled christmas.
cheers, M