Transcripts of pre-birth testing on-line deliberation groups

Transcript for Deliberation Group 3 - closed 13 February, 2008

RE:WHAT WOULD A SUPPORTER OF APPROACH 3:TANGATA WHENUA SAY IS VALUABLE ABOUT IT?
replyJane:01/31/2008 09:36 PM NZST
My thought about this approach is that Tangata Whenua are the first people of Aotearoa and therefore their perspective deserves to be given precedence. I like all the concepts/ ideas raised in the Choice book. The TW perspective makes good sense for all of us ( I think that it also sits alongside Approach 4, but we'll get to that). Therefore supporters of Approach 3 would say that the TW perspective is what makes our country unique and the values it upholds are values for and of all NZers. All to often we hear that TW perspectives are fine for 'them' but the rest of us shouldn't have to accept them as well. We also find sometimes that values / ideals are upheld as 'belonging' to a particular group to the point where they are almost' hijacked' . eg 'christian values/ family values, as well as Maori values. Most of the time these 'values' are upheld by lots of us not just the group they get attributed to (or hijacked by). I like the 'it takes a whole village to raise a child' concept and therfore the concept that the 'whole village' should have input. However, as the Choice book says ultimately even if the individual goes against the group/ whanau , the group will still support that person

RE:WHAT WOULD A SUPPORTER OF APPROACH 3:TANGATA WHENUA SAY IS VALUABLE ABOUT IT?
replyskinkcity:01/31/2008 10:23 PM NZST
extremely great comments Jane. There's so much to like about approach 3 concepts. The only thing that worries me about approach 3 is that it does make that assumption that the group support the individual decision every time even when in disagreement. Can that be relied on? What I mean is, if approach 3 was adopted, should legislation include some kind of wording to mean that even though whanau are included in the decision process, the final decision still rests with the mother, otherwise disputes may go on way too long for the desired tests or treatments to actually take place, which would be not so good if it was the mother who wanted them to go ahead, how is that helpful for anyone? And also, I agree that this has values very adoptable for the country as a whole, in which case again, how would disputes between the mother and the other interested parties be handled. I can imagine westerners might take a little while to adjust culturally to the idea that other people would have a right to a say in their decision? And which people would be included as interested parties. IE I'm thinking of some places that have given rapists paternal rights over resulting pregnancies. This is pretty extreme, but it raises the question. And how would all this affect the privacy laws? ( seriously lets take on this approach RIGHT NOW if it gives me back the right to be involved in any reproductive decisions my young teenagers might need to make! or even just to be informed they're making one :o( )
Not trying to move on to costs before everyone's finished with values, as you can see I think the possible lifting of too strict privacy law is a good thing, but I'm exploring that some may see it as a cost as well.

RE:WHAT WOULD A SUPPORTER OF APPROACH 3:TANGATA WHENUA SAY IS VALUABLE ABOUT IT?
replyDave_Kent:01/31/2008 11:00 PM NZST
This is my "foreigner's" view of the TW approach:

Each person exists within a web of relationships that branch from the family through the hapu and iwi, and eventually to the nation as a whole. Just as a family immediately branches into a mother's family and a father's family, one person is highly unlikely to be connected to a single hapu or iwi, but will have multiple relationships that are formed by the connections of lineage. If your 4 grandparents are from 4 different hapu, then there are probably 4 marae that you are equally welcome at.

This array of relationships connects the individual and the families of the present with the individuals and families of the past, and those connections are echoed in the artifacts of the land around which people have lived. A marae, or a mountain or a river all speak of the people who have lived under and beside them.

As mentioned in the choicebook this relationship with the land extends to ideas such as appropriate burial of discarded body fragments. Fingernails should be put in a known place, not thrown carelessly away. A placenta may be buried in the ground and a tree planted over the top of it to reinforce and respect the connection between the person and the land.

So of course important decisions such as bioethical decisions about testing during pregnancy and the actions that may be appropriate after testing are things that should be discussed among groups to which the individual undergoing the procedure is connected to. Some people may wish to speak for the mother, some for the child, and some for those who have been before. To not consult would be seen as an insult to the people who matter most.

RE:WHAT WOULD A SUPPORTER OF APPROACH 3:TANGATA WHENUA SAY IS VALUABLE ABOUT IT?
replyDave_Kent:01/31/2008 11:08 PM NZST
In some ways the questions we have been asking so far (who should decide? what are we allowed to do?) are not questions that are answered by the TW view, in fact to ask them is almost to misunderstand the system. A more appropriate questions might be, "who will support this mother while she is going through this situation?"

Also, it doesn't always make sense to say, "x is the maori view of y", because the TW are composed of a complex interconnection of relationships and groups, within which different opinions exist and are discussed. There are common themes that would be held by many people, but it's unlikely that you could establish a series of propositions that describe the one true way.

RE:WHAT WOULD A SUPPORTER OF APPROACH 3:TANGATA WHENUA SAY IS VALUABLE ABOUT IT?
replyDave_Kent:01/31/2008 11:20 PM NZST
Having said all that, my question is: to what extent should the views of TW be binding?

Should a teenager who feels no connection to her whanau, let alone wider groups within maoridom, be subject to a process that is established by those that do value their connection?
Should people who have no family ties to any maori be subject to a process that is constructed with TW values in mind, or should there be two separate processes?

And then another random one is (has someone mentioned this already?):

If consultation takes any significant period of time (say a week or two for a hui, or the next time people are together on the marae), and that time means that the pregnancy develops to the point where abortion is no longer permissible, how do we feel about that? (I'm against abortion anyway, so I would see it as a small bonus, but that's beside the point.)

RE:WHAT WOULD A SUPPORTER OF APPROACH 3:TANGATA WHENUA SAY IS VALUABLE ABOUT IT?
replyskinkcity:02/01/2008 09:14 AM NZST
I guess in the context of what we have been discussing re: ivf and pgd, the decision making process would have a larger timeframe than for e.g decisions based on a test during pregnancy, as it would mostly be going on before the ivf was begun.

RE:WHAT WOULD A SUPPORTER OF APPROACH 3:TANGATA WHENUA SAY IS VALUABLE ABOUT IT?
replysue:02/01/2008 09:18 AM NZST
Dave_Kent - this is what i would have said too if i could have put it as well as you
also

RE:WHAT WOULD A SUPPORTER OF APPROACH 3:TANGATA WHENUA SAY IS VALUABLE ABOUT IT?
replyJane:02/01/2008 09:24 AM NZST
I agree with Dave_Kent' comments/ ideas but I guess the thing would be to develop policy and/ or a social climate where this way of thinking and acting became part of the societal culture, rather than a 'case by case' thing. Within that culture individuals could make decsions on the baisi of 'knowing' what is expected. I know I'm not making great sense (Dave_Kent you are so articulate LOL) I know that things would still happen which weren't as the cultural 'norm' would expect but that would underpin the decisions non-the-less.

Timely press release from PB
commentDave_Kent:02/01/2008 09:32 AM NZST
Related to the last approach, but interesting because it's in the news (see link)

Suggested Link:http://www.sciam.com/article.cfm?id=pope-says-some-science-sh

Tena koutou I'm Sam 2 - Tangata Whenua Approach
commentSam:02/01/2008 10:31 AM NZST
Tena koutou, I'm Sam 2 and happy to be aboard, I can see that you have all had some lively discussions on approach 1 and 2 so lets keep that energy flowing in the Tangata Whenua approach. As Sam 1 has suggested if you are unsure about this approach the re-read pgs 15, 16 and 17 of the Choice Book then lets begin by talking about the benefits of this approach.

RE:Timely press release from PB
replyMissys:02/01/2008 01:05 PM NZST
Sorry - I've been away all week, and missed a lot of good conversation. Ive read through it all (took me two days) and i do have to say the one argument that jumped out at me was Dave_Kent' abortion argument. 'Fraid i dont agree with that at all. Theres only so many precautions a man can take, and theres alot of sneaky women out there looking to take advantage. Its a 50-50 issue. Not a mans issue or a womans issue. Its an adult issue. And hi to Sam2....

RE:Tena koutou I'm Sam 2 - Tangata Whenua Approach
replyJane:02/01/2008 02:46 PM NZST
Hi Sam 2- I thought that's what we had been doing LOL

Tangata Whenua approach in focus
commentSam:02/01/2008 03:04 PM NZST
Thankyou for your comments Dave_Kent, Jane and Missy. The TW approach is cognisant of both the individuals decision as well as the whanau's decision. Put simply, its likely that any policy development in this area would ensure that the woman involved would know that she could make a decision on her own as well as have her whanau's acknowledgement and support in whether she would terminate or continue a pregnancy. The idea of a supporting whanau is a good one for the individual and the whanau but often the reality is that Maori women Maori and many non-Maori will take that decision (often) alone. The TW approach is to include the whanau involvement in important decisions as well as enable the individual to take her own individual decision(s).

The point about how long would whanau take to make a decision and will the legal time for termination expire. I detect an assumption here that a hui would take days and days, whanau & its members (like most families) are capable of making decisions quickly providing the correct information is given and those involved are armed with the right information.

Dave_Kent your point about interconnections explains whanaungatanga, Maori value these connections. All peoples were indigenous to somewhere, some land or lands and no doubt would have held a similar value in earlier times and indeed now...many people are comfortable with the TW approach for themselves whether they are Maori or not.
Its clear that modernity and the establisment of cities (cities being relatively a new thing) urban sprawl...globalisation has changed our communities and familial values permanently ...and Maori struggle still to retain these values in the face of globalisation. What do others think?

RE:Tangata Whenua approach in focus
replyDave_Kent:02/01/2008 03:43 PM NZST
The assumption wasn't that a hui would take a long time, it's just that the more people you involve in a process the more opportunity there is for delay. I would imagine that where a discussion like this needed to take place it would be a small number of people in an informal setting, not an over-nighter with full catering.

If you're at week 8-10 and starting to show, you're going to be pretty motivated to make a decision quickly. A delay of even a week can make quite a difference.

Tangata Whenua approach in focus
questionSam:02/01/2008 04:23 PM NZST
OK point taken Dave_Kent. Well what do others think the benefits of the Tangata Whenua approach would be? What about the Treaty of Waitangi? Is pre-birth testing a Treaty issue?

RE:Tangata Whenua approach in focus
replyskinkcity:02/01/2008 04:57 PM NZST
Yes, I agree with Dave_Kent' point, which was also what I tried to say. Not that a hui would be a delay, but that the more people involved in a decision the greater the delay full stop, and that time is sometimes of the essence. As far as urbanisation goes, the bigger the cities and the more diverse the communities, the less we interact with one another in a positve way, so no wonder Maori struggle to hold onto this aspect of their culture, everyone does to some extent. Perhaps one of the reasons genealogical research is such a popular passtime now. Before western society became so obviously 'western' we also spent a lot of time interacting with each other as a community, whether family specifically or neighbours. This had so many good things about it. Nowadays it would be good to see some of that interaction happen again, but along with that would also have to go trust, respect, value for one another, generally 'nice' thoughtful behaviour, because these things are lacking that used to be in place at that time.
Lastly, I know we as a nation always look to the treaty to check our cultural appropriateness and to make sure and I guess a treaty that has been made needs to be upholded, and I don't want to offend anyone, but does it ALWAYS have to be about "the treaty"? Can we not promote Maori cultural ethics and their preservation as an intrinsic and essential part of New Zealand without continuing to make reference to the divisions between people. The word treaty makes me think of a ceasefire between opposing groups every time I hear it, but perhaps that's because I wasn't raised in NZ so don't have the same childhood familiarity with it. I may be coming from a position of a lack of understanding and I apologise if thats the case, but I'm one of those who possibly think we should come up with something new, not that this is the time to discuss that I suppose. I guess we have to work within the current framework don't we.

RE:Tangata Whenua approach in focus
replyJane:02/01/2008 07:58 PM NZST
Funny skinkcity how words mean different things to different people- for me Treaty/ Tiriti implies an agreement/ understanding/ respect for both parties and yes, in this country is does/ should ALWAYS come back to it!!!

RE:Tangata Whenua approach in focus
replyMissys:02/01/2008 08:59 PM NZST
I think perhaps a negative aspect would be if a hui deliver a situation that is untenable to the woman involved. You know if the whanau want to proceed with a pregnancy that a woman doesnt want.

RE:Tangata Whenua approach in focus
replyBernice:02/02/2008 11:38 AM NZST
just a note that I too get tired of always making things about 'The Treaty". We know it's important but I agree that it seems more important and relevant to me to, as you say, promote Maori cultural ethics etc. I personally see a lot of value in having a better understanding of Maori tikanga but I too have a culture which is equally valuable and don't feel the need to bow to political correctness gone mad.

RE:WHAT WOULD A SUPPORTER OF APPROACH 3:TANGATA WHENUA SAY IS VALUABLE ABOUT IT?
replyBernice:02/02/2008 12:00 PM NZST
Thanks Sam, I'll try to keep up.
Re the TW approach. I can't see approach 3 as a stand alone approach, and it may involve ideas from either or both of approaches 1 and 2. I see Approaches 1 and 2 as the either or approaches with approach 3 needing to be included in both of them. It seems a bit of a misnomer to call approaches 3 and 4 stand alone approaches to pre birth testing, rather they seem extensions to be considered in viewing the whole subject. However I'll endeavour to anwer the question.
I believe strongly that Maori values and cultural issues need to be considered seriously in any form of legislation regarding pre-birth testing. There are a lot of pro's within this approach which encourage support for the individual, as long as the individual has the freedom to make the final decision. (tho' I agree that any legislation which gave parents more involvement and say with their teenage daughters decisions in this area would get my full support too).
Having said that I believe that we, New Zealanders, should all be treated the same and listened to equally, and resources shared equally, not with one people group having preferential treatment or more funding than any other.

Life is a Gift
commentBernice:02/02/2008 12:36 PM NZST
I strongly support this approach and do not believe in abortion at all. In reading some of your posts there are obviously a wide range of opinions here as there are in society at large. Having had 5 miscarriages and seen some of my babies at only a few weeks conception, I have a very deep awareness that these little creatures were babies, not fetal tissue or products of conception. I am glad that the medical services have become more sensitive, in most cases and not like the Dr in my first m/c who simply threw the 'products' into the rubbish bin and explained nothing to me. I believe all embryo's created should be implanted. Having not had to undergo IVF I am still undecided about whether we should be able to unnaturally create life. But if we have created it, we must accept the responsibility that goes with it, just as if we had created it naturally.
I believe there should be more support and positive reinforcement and help for those with disabled family members.
I don't believe any one of us really knows just what we 'can cope' with until we are put into the situation. With more support offered, which would need to be accepted, I believe most of us could cope with much more than we presently believe. I have gone through what some would consider enormous difficulties in my life, that, had I been told I would go through them ahead of time I may have not believed I could cope, but I did and with very minimal support.
Sadly I think our society has become so self centred that we barely look outside our own comfort levels in decision making. Character is built through difficult and trying circumstances, not with ease of living. I find it difficult to believe that loving parents can flip to become murderers simply because their child is disabled, sick or deformed; so don't believe that society has degraded to such an extent that people will begin killing their own children once they are born. That rather than loathing the child within me I would seek all information to enable me to mother my baby the very best I could, with all the support available.
Personally apart from blood tests and ultrasound (not for knowing the sex of the child) I would refuse all testing and am disappointed and saddened that so many tests are offered. I rejoice in the fact that I am pregnant and look forward to my new baby, obviously hoping for good health for both of us.

The Treaty is not going away...
commentSam:02/02/2008 08:07 PM NZST
there is an interesting range of views and just to pick up on a couple I have a few comments, in regard to the views put forward on the Treaty, I think its an interesting how people are concerned about addressing Maori rights as "political correctness" Historians tells us that by 1890 Maori had lost 90% or their land (see the book by Claudia Orange: Treaty of Waitangi, or Angela Ballara's giving of evidence in Waitangi Tribunal claims). Thats 90% land loss only 50yrs after the signing of the Treaty, these historians also tell us that various land speculators in Auckland (Whittaker & Russell) alone had made 700% profit from their dealings with Maori land sales, now, if we took 90% off any body let alone a whole race of people, I'm quite sure those people wouldn't be the least concerned about 'political correctness' they'd want what was theirs back....thats in any culture or country Now how does all this relate to pre-birth testing. The Treaty is to umbrella all issues relevant to the health and wellbeing of Maori citizens in New Zealand, keep in mind that the Treaty is a protection for all of us, it is something that makes us stand out in the world and many non NZers are envious and inspired by what NZ has done in its attempt to address historical wrongs, Geoffrey Palmer even wants to constitutionalize the Treaty so that it would be part of our supreme law so that, as he says "changes (or repeal of Treaty provisions don't get made in the dead of night in parliament while people are sleeping"

Essentially you are pointint out the tensions Bernice when you talk about 'political correctness' because certainly there is this view that Maori are getting 'benefits' these tensions were articulated often in the deliberations I attended but should they be? indeed we need to be mindful of them when developing policy.

Now, Bernice we are on to the TW approach not Life is a gift at the moment and that doesn't mean that we can't talk about the Life is a gift approach but lets focus here on the TW approach for the moment.
So what are other tensions in this TW approach 3?

RE:The Treaty is not going away...
replyskinkcity:02/02/2008 09:16 PM NZST
hi Sam2, (welcome, by the way.) I think there is a long way to go before Maori, or any race for that matter, but particularly Maori with their strong spiritual connection to this land as their home, have equal access to the benefits of modern society and furthermore seem to be the majority 'dumping ground' for most of its ills. This is easy to see if you look at the area of education, and I feel this ties in with our topic when we're talking about culturally targeted information schemes. I agree with Bernice that access should be equal for all regardless of race but we can't close our eyes to the idea that in order to bring this about, some sectors will need more input, whether of funding, or effort, or support, or education.... to bring them to the same point, and this really involves working smart, and tailoring to fit the circumstance/people rather than just throwing the same things at everyone and expecting us all to have the same response. I still feel that the strength of feeling and perceptions surrounding the treaty (either way) can make turning things into a "treaty" issue a bit of a liability.. Not that the actions would be any different, just affixing the label. There is definitely the tension out there that Maori are handed a lot of things on a plate, and this could be a tension in this area if cultural distinctions are made, but there could be other tensions. For example the Maori who reject their cultural / familial connections and feel more 'western' (for want of a better word). Its already been brought up this might be difficult if others in the whanau wanted to assert their relationship in decision making, so there could be tension where women resent that they feel pressured to share information and decisions with those they don't really want involved. There's also the societal tension in that it may well affect privacy law and access to information, again, already mentioned. There'd also be tension from Maori who are concerned that any cultural 'concessions' would just be a front for further scientific exploitation, so the education / information area of this issue again becomes important. I am in total agreement that none of the four approaches can stand alone. To get the best recommendations is going to need a good chunk of each of the four put together.

RE:The Treaty is not going away...
replyskinkcity:02/02/2008 09:18 PM NZST
just read through my post and noticed where I put "handed a lot of things on a plate" - please don't read into that as if I said that was my own opinion......

RE:The Treaty is not going away...
replyDave_Kent:02/02/2008 11:30 PM NZST
(It's probably worth adding to Sam's comments about the land sales that the issue was the legality/morality of the land transfer process from Maori ownership, not the subsequent profits.)

One of the most contentious issues with Maori/Crown relationships is 'tino rangatiratanga'. At the risk of oversimplifying it, the problem is that the Maori text of the treaty appeared to guarantee the Maori signatories their existing structures of governance. So when a chief signed the treaty he was probably assuming that he and the other tribal leaders would continue to exercise authority over their local area and people as they had always done. He was making peace with the Queen, but not ceding governance. The English signatories and subsequent governments almost certainly had the idea that the Queen would be the ultimate sovereign of the whole country.

So technically speaking there are a whole lot of people who never gave up their right to rule themselves, either because their version of the treaty said they could keep it, or because the ambiguity of the different wordings made it non-binding. Either way, it does not legally transfer to the crown.

The problem is that we do not see that in operation now. The country is ruled by parliament, there is endless _reference_ to the treaty, but nowhere that I know of is there a traditional Maori tribal entity that has authority equal or superior to the authority of parliament, and it's delegated agents such as the police.

RE:The Treaty is not going away...
replyDave_Kent:02/03/2008 12:00 AM NZST
You can imagine how contentious things would become if that ever did become the case.

So trying to limit ourselves to the pre-birth testing scenario... If we assume that the TOW guarantees existing sovereignty to any group that can trace itself to a signatory of the treaty (for example an iwi that has existed continuously since then, and had a recognised leader who signed the treaty on behalf of the tribe with the tribe's full consent), then that group should be able to set their own standards regarding access and use of PBT. Those decisions would be binding within the group, but would have no authority over other iwi, or over non-Maori who are beneath the parliamentary government.

This would be totally unworkable in practise anyway, and I find it hard to imagine any way that tino rangatiratana could operate in NZ to the full extent allowable by the Treaty.

A more pragmatic solution is to find a set of principles that are in line with generic Maori values (such as always allowing the family to have the right to determine what will happen to fertilized embryos and other human tissue), and incorporate them into an overall policy.

RE:The Treaty is not going away...
replysue:02/03/2008 10:36 AM NZST
wow - there are some very clear messages in this bit - and i thought the sams were facilitators without their own voices!
cool - i agree with this version of events - and am allowed to being from the land of the land stealers!

i have taught in predominantly maori classes in a high school in the hutt valley - i saw the difference in the students when i was priviliged to take over the maori language classes for a short time as a reliever - their body language was clear - their self esteem soared when in that environment compared to the maths classroom - they made me as the outsider feel very included- i tried to transfer some of what i could into my other room but it didn't work

i have every respect for people who have to operate in a foreign culture as i have lived and taught as the foreigner in holland where i had to operate and teach in a language that was very difficult to pick up

i do believe that learning the language and operating in the culture is the only way to understand where someone is coming from - so this information needs to be available in all languages and be presented to all cultures that live here so that each person has a chance to understand fully the reality of these important events

RE:The Treaty is not going away...
replySam:02/03/2008 03:05 PM NZST
Yes approach 3 & 4 work well together for the points you make skinkcity, certainly working smart and tailoring to fit each situation will go someway to solving the 'catch up' that is required to have Maori participating at a level equal to mainstream. I don't believe we can talk about equality for all when clearly one group is starting from a 'back of the line' position. We only need to see who can afford the best schools for their children to know that many Maori are not starting at the same position. I also don't believe that the Treaty was ever meant to be a liability, it was to protect and progress all who are citizens of this country not just Maori.
The idea that Maori 'get things on a plate' is erroneous if that were the case we would not have the education, criminal or health statistics that we have, if anything Maori have had things 'taken off their plate' I understand this view to be coming from a sector in our society who are not informed or who find it easier to 'name call' rather than think through the social injustice that has come about due to the historical wrongs. This is not to say that there are many Maori who are managing fine and are succeeding in NZ society by anyone's measures education or otherwise.
Maori are not a homogenous group and have just as a diverse view on issues important to this country as any other section in our society. If Maori 'reject' their culture and choose to be more western, that surely is their choice and shouldn't be judged negatively for it, they like any of us have the right to choose what lifestyles we want, that is the beauty of living in a democracy. In addition there are many reasons why some Maori 'reject their culture' (which we won't go into here) but a lot is to do with how our society has been shaped.

RE:The Treaty is not going away...
replySam:02/03/2008 03:14 PM NZST
The subsequent profits secured by illegal and immoral dealings in our history is the very reason why there is an inequality now in the 'haves' and the 'have nots' the 'educated' and the 'not so educated' we witness this everyday in NZ society, the two can not be separated.
Both the Maori and non-Maori version of the Treaty are what are referred to in the Waitangi Tribunal process when trying to address historical wrongs. No there is no separate Maori system for law or police but of course there are the advocates that argue that there should be. Rather we have a legal and political system now which is trying to recognise multiculturalism as well as bilingualism, hence Maori television and radio.

RE:The Treaty is not going away...
replySam:02/03/2008 03:22 PM NZST
Tino Rangatiratanga is used today to express self determination, self-autonomy (either as an individual or as a group) the international law view of self-determination is not the view that most Maori have of it although there are some Maori who strongly argue for the international law view, ie: separatism, two systems of law...we see this in the political arena today, but on the whole Maori are referring to their right to be Maori or to whatever they want to determine.

I agree also with your pragmatic solution to find a set of principles which would capture individuals decision making rights as well as the collectives involvement and support, ruling out ideas of group deciding over a woman's rights to her body...as mentioned above Maori have expressed a desire to ensure that women making decisions on pbt issues have the individual and the collective working together.

sam 2 is quoting credible historians
commentSam:02/03/2008 03:25 PM NZST
sam has put together an analysis that is generally accepted now, the analysis has now lead to a Treaty jurisprudence that didn't exist 30yrs ago, this jurisprudence is now taught in professional schools through out the country.

RE:The Treaty is not going away...
replySam:02/03/2008 03:29 PM NZST
yes many participants have raised the view that information on pbt needs to be in all relevant languages, its also understanding another culture ways of viewing the world, appreciating different world views from one's own

RE:The Treaty is not going away...
replyBernice:02/03/2008 07:03 PM NZST
Is this forum now getting away from Pre Birth Testing to the Treaty of Waitangi, anyone else confused by that?

RE:The Treaty is not going away...
replyBernice:02/03/2008 07:05 PM NZST
Is this forum now getting away from Pre Birth Testing to the Treaty of Waitangi, anyone else confused by that?

RE:The Treaty is not going away...
replyBernice:02/03/2008 07:07 PM NZST
Is this forum getting away from Pre Birth Testing and onto views on the Treaty? I'm a bit confused...

RE:The Treaty is not going away...
replyBernice:02/03/2008 07:16 PM NZST
Whoops, this took so long to load that I thought it hadn't and tried again, and again... sorry.

I agree that information needs to be made available in numerous languages and through different groups and agencies to enable the most people to have access to it.

I think it must be difficult for many of today's Maori people to make decisions on cultural issues when many are from several generations of bi-cultural families, so have a large range of values and beliefs within their family group.

RE:The Treaty is not going away...
replyJane:02/03/2008 08:42 PM NZST
The way I see it is that Approach 2 is about the Tangata Whenua perspective and that has to mean that the Tiriti O Waitangi is central when discussing this approach- It's not 'getting away from one thing to the other' but rather the one encompasses the other :)

RE:pro life
replyBernice:02/03/2008 10:28 PM NZST
Just a little aside to an older post re sex education for kids. Has anyone else noticed the increased rate of STDs Teen pregnancies and teens being involved having sex seems to have risen right alongside increased supposed sex education in schools? My daughter was given some pretty explicit sex education/sexual orientation by the Public Health Nurse under the guise of pubertal change, in her Year 7 & 8 class. When I brought this to the attention of the school they were shocked. When I took my concerns to the nurse involved she felt it was the correct thing to do for girls of this age! Children are told so many things are right and normal that simply weren't so 20 - 30 years ago (and still aren't).Sadly one of those things is not that life is not ours to take, and when you abort a fetus, you kill a human being.

Costs and consequences for Approach 3 - Tangata Whenua
questionSam:02/04/2008 08:34 AM NZST
Well I think we have discussed the tensions of approach 3. TW and some of those comments have alluded to consequences but are there any more thoughts on the costs and consequences of the TW approach?

RE:The Treaty is not going away...
replySam:02/04/2008 08:37 AM NZST
yes, the Treaty is the basis for the TW approach and to be clear the reason why I give the analysis I have is really to give a background to Treaty and TW issues, its no different to explaining some of the facts regarding IVF or PGD, its to be informative so that we are discussing the TW approach in an informed way.

RE:Costs and consequences for Approach 3 - Tangata Whenua
replyskinkcity:02/04/2008 09:23 AM NZST
Hmm, I'm actually finding this question a bit tricky. I'm sure there must be costs, but what would they be.... Increased state financial cost in needing to have more than one method available within the information system, decision process and the support system perhaps. Perhaps where we've talked about time constraints this would be a cost in some cases of in-utero testing, but if maori women are more comfortable with the health resources and become involved earlier in their pregnancy, time constraints could actually be relieved rather than increased through that.... Someone else might have to take the costs side of things maybe. Consequence wise, hopefully maori women would feel more comfortable with the health resources as I've said, Maori women would have greater access to the options, have more confidence that they are able to make their own decisions in a properly informed way, and control over the parts of their / their children's bodies that are removed for tests. A cost could be if this includes blood taken, I'm not sure how this works at the moment, but I imagine it would be a bit complicated to have blood thats sent to the lab returned if there was any left over. Also I'd LIKE to see in consequence, that some of these things would filter through to other ethnic groups, and not be 'Maori-only'. (Warning, small rant ahead, steer carefully- I've been VERY annoyed at the hospital when I've had my children and the unit has turned away visitors without even telling me they'd come because they were my siblings (not my husband) just because it was too early in the day (ie 11am!), whereas the unit allows for Maori family to visit and stay due to the recognition of whanau needs. Now, I'm not griping that this need of Maori is being met, thats fantastic, but unless legislation is made clearly universal, health services tend to be very 'pigeon holey' and I don't see why I cannot have that same right if it is important for my whanau too. We've talked about how a lot of the values expressed in the TW approach are beneficial for all, but do other groups have access to be enriched by those benefits when so many think that a Maori approach should be only for the Maori regardless of possible wider application?)

RE:Costs and consequences for Approach 3 - Tangata Whenua
replySam:02/04/2008 09:29 AM NZST
Totally agree with you on that Skinkcity. For me its not solely a cultural/Maori thing to have family members visit after you have given birth its a matter of simply recognising family and the need of family to have reasonable access to their newest member of the family (whanau if you like).

Is it forum fatigue?
commentSam:02/05/2008 11:30 AM NZST
Well perhaps its time to move to the fourth approach "Its About Information, Knowledge And The Public's Involvement" lets discuss the benefits of this approach as the say "Knowledge is power".

Approach 4
commentBernice:02/05/2008 11:53 AM NZST
Firstly I must say that I don't consider approach 4, "It's about information, knowledge and the public's involvement" as a stand alone approach to the issue. It appears tome that it may and probably should be incorporated into any and all approaches to Pre Birth Testing, as I believe with Approach 3 "Tangata Whenua". having said this I'll do my best to see the pros and cons of this approach.

I agree that should one choose to have pre birth testing to see if the baby has any abnormalities then one may be put in a most difficult position should any abnormalities show up. It would depend on why you wanted to know, simply to prepare yourself or to decide to rid yourself of the possible future difficulties you may encounter. This approach almost seems like approach 1 but from the perspecitive of someone who needs more information.

Certainly this is more than science, it "can lead to complex, difficult and emotionally painful decisions," so yes "the medical facts alone are not enough" as the booklet says. I agree that cultural, ethical and spiritual issues need to be considered in a serious manner. I believe it will be very difficult though to decide whose culture will be relevant, whose spirituality will be taken as the norm. Whew! That would be HUGE! to be continued...

Approach 4 (= Approach 1 with brochures?)
commentDave_Kent:02/05/2008 02:38 PM NZST
I'm trying to work out just exactly what approach 4 is. From what I can work out it is:

- Tests available to all
- Abortion available to all

With the added comment that sometimes tests or abortions are offered and administered without enough pre-information or post-counselling. So we should keep the status quo, print some better brochures and talk with mothers more before and after a test or abortion.

In which case it's just approach 1 in sheep's clothing? (or am I missing something?)

[and as a sidenote, PBT cannot have a "devestating effect" on a child as described in the coursebook. A test reveals information about a person, it doesn't affect the person in any way.]

RE:Approach 4 (= Approach 1 with brochures?)
replySam:02/05/2008 03:33 PM NZST
Approach 4 is does not mean "abortion available to all" it is about having information on many things and on many levels, eg: pre-birth tests, rules & regulations, bioethics, technology, sociopolitical analysis, any information that would assist in making decisions. It could be the choice to NOT have information. Generally speaking though approach 4 is to be informed for example to begin making group decisions on pre-birth testing.

RE:Approach 4 (= Approach 1 with brochures?)
replyskinkcity:02/05/2008 04:53 PM NZST
Funnily enough I had a question kind of along these lines, which was.. when we're talking about information, do we mean the pre-test information that allows us to make informed decisions, or the information we get from the tests, or both?
I think there are massive benefits from having pre-test and peri-test information available, so that those who need to make serious decisions whether to have testing and those who need to make decisions based on the test results can be sure they're making the best choice possible given EVERYTHING currently known. Its a comfort (I think) to have it there if you want to access it, so that the amount of time you're worrying about 'what don't I know?' or later on 'if only I'd known..' is reduced heaps. SO information to me means a greater peace of mind than doing things blind. However I think people should have the option to say no to the information if they really want to (having said that they should probably in that case sign some kind of waiver!) Having the information available in a user friendly way also makes the process more understandable and down to earth, less threatening, and therefore more accessible. It also gives people access to support groups and such that they might not have been aware of, which is where I would think the info from a cultural / spiritual / practical point of view would come. You wouldn't be able to expect the medical professional to learn the perspective of every religion under the sun in order to counsel a client for example.
BUT, if the information is power approach is all about making tests universally available just for the sake of doing the tests ('just in case' I guess), when there is no proven or specialist recommended need to do a test, then the power of knowledge comes at the expense of the risk to do harm just for the knowledge itself. That's taking it too far in my opinion.

RE:Approach 4 (= Approach 1 with brochures?)
replyskinkcity:02/05/2008 04:59 PM NZST
it seems to me that this would work in an approach 1 environment where people get to make their own decisions, or in an approach where the health professional or even the state are in charge of the decision, because in either case, SOMEONE is making decisions. If I'm thinking about government decision making for example, I'd like to live in a country where they take all information into account, not just go with the prevailing fashion or the loudest voices, the most 'PC', or the most likely to keep them in power, which unfortunately is what they often seem to do

RE:Approach 4 (= Approach 1 with brochures?)
replyBernice:02/06/2008 01:33 PM NZST
This is possibly what I tried to express, but was trying to be (unusually) tactful.
I agree with Skincity that we shouldn't seek knowledge for knowledge sake, that testing should only take place where deemed necessary not just because it's available. I also worry that the State could take over decision making once testing is complete, something I wouldn't have considered they would do until the past few years, where the Government has begun making decisions for individuals which they have no right to make, and which the country in general don't want them to make. We are on a slippery slope and must think ahead.

I agree that this appears to be abortion on demand with brochures.

discussion of eugenics by abortion
questionskinkcity:02/07/2008 10:42 AM NZST
michael laws is having this discussion on radio live this morning. Interesting timing... any one else heard it?

Clarification of approach 4
commentSam:02/07/2008 01:02 PM NZST
Hi there. this is Sam1 back again.
I am a bit surprised that you see approach 4 as "abortion on demand with brochures". That was not the intended focus. Approach 4 arose because many people said that when they began testing they did not realise what the endpoint might be eg they thought the scan was a social event where they got the first picture of their child. They did not understand that if a problem was seen an amnio might be recommended and that might lead to decisions whether or not to continue the pregnancy.
Approach 4 is about ensuring that everyone has access to appropriate information that includes the non-medical, emotional, cultural etc factors- and provided by trained people. The decision might then be not to have certain tests. One suggestion was that if Down syndrome was suspected or detected, parents need information from families who have a child with DS so the decision includes practical information rather than the (often immediate) response to terminate.
Approach 4 recognises that information is power and if medical professionals have all the knowledge this might lead to decisions being framed in a purely medical context.
So...
WHAT DO YOU THINK WOULD BE THE BENEFITS FROM APPROACH 4: "INFORMATION KNOWLEDGE AND PUBLIC INVOLVEMENT"?

RE:Approach 4 (= Approach 1 with brochures?)
replySam:02/07/2008 03:44 PM NZST
Hi Dave_Kent
Page 18 of the choicebook refers to CONDITIONS that could have devastating effect. I think many people would accept that conditions that will cause the child great pain and perhaps an early death are devastating- for the parents as well as the child. That's not to say that palliative care might not help the child or that the parents should make any particular decision- but some parents of children with some rare disorders did use this language when suggesting that information they needed was not just factual- it also included the emotional impact of the diagnosis.

RE:Clarification of approach 4
replyskinkcity:02/07/2008 03:56 PM NZST
hi there Sam1, bye Sam2, nice to have had you here. I've given my first thoughts on benefits of approach 4. Its been kind of quiet on the forum for approach 3 and 4 so far.

RE:Clarification of approach 4
replySam:02/07/2008 04:10 PM NZST
Hi Skinkcity- It's good to be back with you. Am I correct in thinking that you support people being provided with information that suits their needs before they decide whether to have tests and what to do once they get the results- but not suggestions that they should have the more unusual tests if these are not clinically indicated (or if people want such things they should pay for them themselves!).
People at the framing groups suggested that it was assumed that they would decide a particular way and they were not given much information about the alternatives. Of course medical professionals could not be experts in diverse spiritual matters but I guess if it is recognised that these decisions are not just medical matters people can then seek advice from those who do have knowledge in that religion or culture.
I agree- things are rather quiet- perhaps everyone was enjoying the sun yesterday rather than sitting hunched over the computer! If the rest of you are reading but not commenting- do join in - we would love to hear your thoughts!

RE:Clarification of approach 4
replyBernice:02/07/2008 04:27 PM NZST
I agree with what you are saying Sam in that people need to have as much information as poss before going ahead with testing. They could also be given direction as to where they can obtain more info specific to their needs (culture, religion, etc). The idea that should results show something unexpected then to enable them to talk with someone who had a child with the same condition would be very helpful I would say. Therefore support groups and people willing to talk would need to be found and listed.

RE:Clarification of approach 4
replyskinkcity:02/07/2008 07:32 PM NZST
yes I wholeheartedly support the idea that people should have information to assist them in making decisions, and I'd have to go along with those who feel that medical practitioners often make assumptions on what a patient / client will do and give very little information with regards to alternatives. I would imagine the pressures of time and finance have coloured a lot of that, but you do still get those medical professionals that think due to their being a 'professional' any choice other than their assumption would be a dumb idea so avoid giving it any focus or validity. I also think this approach is an opportunity to bring support groups, counselling facilities, kaumatuas (sp? sorry), religious institutions, etc into the picture further. The medical profession can't BE all those people, but they could certainly hold a database of them both nationally and locally (and internationally for some rare conditions) and provide the necessary mediating link between patients and organisations. There's also the scope for a social worker or specialised nurse of some description to hold that job, and talk people through their options, not only the medical ones, but also the support options depending on the choice made.

RE:Clarification of approach 4
replyskinkcity:02/07/2008 07:46 PM NZST
For example, harking back to the DS discussion again. People who have had a child diagnosed as DS pre-birth may be told, "your child has DS, it could be a very serious disability, around 90% of DS diagnosed fetuses are aborted because of the accuracy of this test, would you like to be booked in for a termination?" Whereas, a complete information would be rather less biased, and include the information that DS has a wide range of severity and many DS people lead quite 'normal' lives, that the chance of a false positive is small but does exist, and would give you contact with abortion support groups and groups for people who have DS children of varying severities, and the offer of an appropriate counsellor to talk things over with.

RE:Clarification of approach 4

replyskinkcity:02/07/2008 07:50 PM NZST
And lastly, you would also be correct in the interpretation that I generally think people should not be funded for tests that aren't clinically indicated. I don't think, in truth, that any of my ultrasounds were really clinically indicated, and I seem to be saying I should pay for my ultrasound (which is not that far from the current climate anyway,) but as its such a universal test perhaps this could be something thats funded on the basis of income or has a WINZ grant or something.

RE:Clarification of approach 4
replyJane:02/07/2008 08:25 PM NZST
Hi all; I have been away but also reading along, so here are my thoughts about approach 4. I think it has merit; and whilst the arguments against in the Choice Book are valid to a degree, I think that lots of people are happy to 'go along' with the opinions of the majority so it isn't necessarily a problem that not EVERYONE would access the information. I am reminded of a couple of things which have directly affected me- one being an initiative locally where junior doctors planning to become GP's, paediatricians or O&G's are 'placed' in a family who have a disabled child for part of a day. The thinking behind this is that often the only time they see these kids is when they are sick (ie on the Ward) or at OPD clinic where everyone is stressed and often been sitting waiting for hours. The programme gives the doctors the opportunity to see the kids in their own environment in their families getting on with their lives and see the positives these families enjoy because of this particular family member. The other thing I think of is my sis-in-law and her husband who are both doctors who went to every length possible to (tests included) to ensure that they had 'perfect' children on the basis that they have 'seen' the distress 'suffered' by families who have disabled children. Two sides of the same coin!!! Also I don't know how many of you read the Dom Post but today (7th) there is a great letter from Suzy Dymock pointing out that there is a similarity between using woman with DS as human detonators in Iraq and pre-natal screening leading to termination.

RE:Clarification of approach 4
replyskinkcity:02/07/2008 08:50 PM NZST
yeah, I think that was the article that sparked off the radio live talk. Didn't get to read it, and didn't listen to laws for too long as he's got such a closed mind. Turned it off as soon as he started suggesting that mental illness should be tested for and aborted as well.......
Question for Jane, do you know how that local initiative went? Was it found to be a valuable experience?

RE:Clarification of approach 4
replyJane:02/07/2008 10:05 PM NZST
Yes, it was great. The docs really enjoyed the opportunity and every one said it had made them rethink their whole perspective on disability. One of those docs went on to become a paeditrician who now has a child with autism, so hopefuly that experience helped shape how his family responded to their own child's impairment. It also made the parents feel like they had had an opportunity to be in the role of 'expert' when all too often they are on the receiving end of 'experts' opinions :)

RE:Clarification of approach 4
replyDave_Kent:02/08/2008 11:46 AM NZST
The GP placement sounds like a good idea (as long as they don't have to do the same hours with the family as they do on the wards!)

My mother has recently begun doing reading recovery work in primary schools and came across an interesting situation last year. She had to test the reading ability of a boy with cerebral palsy. He is not able to speak intelligably, so he communicates via a head-wand. At first she tested him with basic-level reading, 'A' is for apple etc., and as he passed each test took him up to the next level. By the end of a week she discovered that unknown to his family and teachers he had a normal/advanced reading level for his age. It turned out that his sister had been reading to him at home, and he had taught himself to read while she did.

You can imagine my mother's surprise as he passed each new test (the process took a week because of his communication difficulties), and at the end he was able to answer quite complicated analytical questions about a paragraph that he was presented with. Of course that was nothing compared to the excitement of the parents when she showed them.

It's easy to make assumptions about a disabled people's experience of the world when it's not obvious what they are thinking inside.