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

Transcript for Deliberation Group 1 - closed 5 December, 2007

Forum software
commentSam:11/22/2007 09:37 PM NZST
Hi Nicci

Good idea about having a place to list issues with the forum software.

Rather than setting up another forum, I suggest you (Nicci and all you others)`email me any comments you'd like to make. I will start a running list in this forum - I can add items as needed. I'd like to post them so everyone can see the list. You can email me using the 'moderator help' toward the top of the screen or email moderator@bioethics.org.nz

I know your feedback will be valued by the Bioethics Council and the software company, Ascentum.

Welcome Marilyn
commentSam:11/22/2007 11:54 PM NZST
... and thanks for you posts. I liked the way you homed straight in on who should be responsible for doing what. And the article is excellent. I went to a lecture by Christopher Newell earlier this year. One thing that surprised me was that he said the disabled community should be honest about the nature of some genetic conditions and that pre-birth genetic testing was appropriate in some circumstances. Well that my recollection ...

I'm concerned that you've had difficulty accessing/using the forum. I know it wasn't working properly on the first morning - it wouldn't let anyone but me post - and I know some people think the forum needs other features (e.g. threads), and that there may have been a problem with 'whisper', but I'm not aware of other problems. So please feel free to email me at moderator@bioethics.org.nz about your problems.

PGD
commentSam:11/23/2007 12:02 AM NZST
Hi Nicci

Government funded PGD is currently available in NZ for women who have had implantation problems/miscarriages. I think this was introduced relatively recently. I'm okay about discussing this further at some stage. Let's see how we can fit it in when we get to the recommendations stage.

Are you ready to work towards group recommendations for Approach 4
questionSam:11/23/2007 12:22 AM NZST
Hi everyone

I've been reading and re-reading your posts about Approach 4 and my sense is that, as a group, there's quite a lot of common ground, probably enough for you to work out what you would recommend to government in terms of information. So I'd like to mix things up a bit and invite you to have a go over the course of Friday.

In terms of timeline, my thinking is we'll extend the forum by a few days. Over the weekend, we can start working on another approach but I'd like our consideration to extend through Monday so everyone can contribute.

So, your next task is: what actions would you as a group recommend to government in terms of Approach 4: "Knowedge is power"? How would you justify your recommendations?

RE:Are you ready to work towards group recommendations for Approach 4
replymonique:11/23/2007 06:43 AM NZST
re Approach 4. Disability is a very broad term, in the context that parents are presented with a very encompassing but amorphous word, where there is life and death decisions to be made. Some disabilities are potentially mild, others are incompatible with life, but all will have life long effects on the pre-born and those around them. I believe that it is important so that abortion isn't necessarily the only obvious option that the information is presented carefully. I can see that any recommendations this discussion forum has is likely to have far reaching effects, so it is important that we choose our language and approach carefully. As others have noted, disability is actually a very normal part of life, and the underlying inference in any information provided should be, if it is possible, what supports and how will the parents cope with caring for the disability that the child has. With further regards to language, as per above; documents should refer to 'caring for the disability that the child has, rather than 'caring for the disabled child.'
I imagine that information to be presented to parents will be produced in any approach to PGD, and that with respect to this, it should be divided up so it caters for all spectrums of disabilities. EG: diseases resulting in foetal and maternal incompatibility with life. Severe and incapacitating diseases, diseases that have the potential to be mild or allow a normal or good quality of life. IE Down Syndrome.

Thanks for getting the ball rolling ...
commentSam:11/23/2007 07:24 AM NZST
Hi Monique

I like your points about balance and making sure the information includes stuff about support available to parents to help them cope with caring for the diasability a child has and tailoring information to be relevant to decisions that have different sorts of risk. I've certainly seen governments produce risk/scenario-based information in diverse areas (i.e. not just health). I'm sure other group members will comment on these ideas too ...

In terms for recommendations, how do you think the government should go about producing this sort of information? How could that balance, etc be achieved?

Approach 4
commentBen'80:11/23/2007 09:00 AM NZST
Okay I’m going to chip in here (incidentally I agree that we need a ‘quote’ function)

“Is more information always better? “
Loud, aggressive YES. The real risk that people run with the “only give enough info” is that who gets to decide what is enough? Essentially as a public policy tool, the decision has to be to have full information, in an easy to read format readily available.

Otherwise you’re essentially telling people what they need to know and that’s both incredibly dangerous and very susceptible to individual health prof’s biases.

Yes Bias is going to creep in, and as Nicci pointed out – the delivery of information is often more important than the info itself. That can be tightened up but it’ll never bee 100% unbiased – everyone has opinions & it’s not always possible to mask those as well as we’d like.

“How much weight should be given to medical information and risk factors or lived experience of people caring for or living with disabled/ill people or cultural/ethical/spiritual perspectives?”
How much weight info is given is ultimately individual decision. People need to talk to their families, partners and discuss this stuff, see what their opinion is and how that may differs from close loved ones.

I agree that the info provided to people needs to not be solely medical and it should highlight experiences and discussions with family support groups, NZORD and so forth.

RE:Are you ready to work towards group recommendations for Approach 4
replyBrett:11/23/2007 09:08 AM NZST
Morning everyone!

A great series of posts and I really liked the Listener article too. The article certainly expressed very clearly my reservations about PGD. The dangers of technology becoming - with the best of intentions - an oppressor are very real.

Here are some thoughts in no particular order:

I think information needs to be given by competent professionals. I think that the "I won't tell you that because I don't want to worry you" attitude needs to be abandoned.

Because the information here is often of a highly technical nature I think it vital that there be question and answer sessions available.

Time constraints on doctors are often very tough these days (many GPs are operating in ten or fifteen minute appointments) and buying extended time from a doctor can get expensive quite quickly.

To transmit information about risk is particularly difficult. Statistics are often complex and are conceptually very slippery. The professionals themselves often misunderstand the statistics. It is *not* an easy area, and has the misfortune of looking straightforward when it isn't.

I think it is very important that support be offered and that contacts be provided. These days people have been through experiences, researched on the Net and are world experts (literally) on their particular needs and/or problems. If we are faced with very difficult decisions we need this kind of help.

I think that ethical advisors should be available. Not in the sense that they will solve someone's ethical issues for them, but ethical problems can be, and usually are, a minefield and thoughtful help to find our way through would be very useful.

I think that many people need spiritual guidance even though they may not recognise it as such. I don't mean some pompous ass of a priest intoning quotes from the Bible either. But there are many whose lives have been touched by the spirit (or whatever you want to call it) particularly in these kinds of circumstances and would be willing to help.

Information needs to be given in all channels. Visual, auditory and kinaesthetic. Not everyone learns best from a written pamphlet or a Q&A session.

Time for coffee!

Brett

Approach 4.
commentnicci:11/23/2007 10:23 AM NZST
Make mine a flat while (no sugar, double shot) thanks, Brett.

Sam wants us to search for common ground (well, not just Sam, if you know what I mean - we all do, but in response to his request).

Can I approach it the other way for a minute? What do we disagree on with regard to approach 4? We have talked about knowledge is power. I've sounded a note a caution - is loading people up with knowledge just another way of getting them to do what the majority wants? Is loading people up with information when they have just received potentially devastating news giving them opportunity to process it appropriately? Can people trust the information?

My thought is that you can alleviate some of the concern expressed above by making sure the information comes from a range of people/places/organisations. It has been suggested before that it shouldn't just be the health professionals who give you information. I have had extremely good information from health professionals - and extremely bad. (That's no great surprise, after all, I've had extremely good service from service stations and extremely bad. The point I"m making, of course, is no one profession can ever be expected to get 100% all the time, although you place a higher expectation on health professionals).

Where I'm going with this is:
- Who do we expect should be able to provide the information?
- What information should they be able to provide?
- What does that mean in terms of funding?

Here's a case scenario which is familiar to me - women who have had miscarriages. (I volunteer for our local miscarriage support group.) I think you can apply it to someone who has been given a diagnosis of severe genetic disability for their pre-born child.

A woman is told her child has died and she needs to consider the following:
i) going home and allowing her body to expel the baby without any further intervention.
ii) having surgical removal.
iii) opting for a chemically-induced miscarriage, and returning home or staying in the ward for observation.

Cont'd.

RE:Thanks for getting the ball rolling ...
replyKelly:11/23/2007 10:29 AM NZST
Sam, re: your comment about ensuring information/support is available to parents in terms with pre-birth testing/diagnosis, etc - I would love to see more of a streamlined approach. What I mean is that we need a more co-ordinated approach (just what Brett, Ben and Nicci have all said previously - including a wide range of 'skilled' individuals/groups to assist in helping families). There are many individuals/families from the disabled and medical community who would love to extend their support to others facing tough decisions, etc. It would be initially costly to instigate, but the benefits of having key people/groups that could be utilised for individuals/families would be extremely positive. These key people would need to probably have some form of induction into communication, counselling, etc (parent 2 parent run these courses for families to assist others) and then have some form of database that all specialists doing pre-birth testing could access. This database would include many people and their families who have conditions such as Cystic Fibrosis, Huntington's Chorea, Downs Syndrome, etc that could link up (either face-to-face, or video conferencing) to talk. I think that this approach is definitely a more holistic one to use in conjunction with the specialist information.

Cont'd.
commentnicci:11/23/2007 10:33 AM NZST

She is in shock. Her precious baby has died. The registrar is waiting for her decision so he can put her on the theatre waiting list or discharge her and clear the bed. He has explained the medical consequences of each. i) seems easy - she will be in a familiar environment, but is unsupported and alone at home ii) is quick, resolves the issue instantly - but carries a certain amount of risk and may have future implications. iii) seems a good compromise - but doesn't have the benefit of being at home or the quickness of surgery. How does she choose?

At the moment, she only gets to hear what the registrar has to say, maybe one of the nurses might chip in, and her and her partner have to make the decision.

Here's what could happen:

At the point she is given the three options, a patient advocate is called. This advocate is specialised in the area of miscarriage support. She can explain the three options in more detail. Drawing on her experience with previous patients, the advocate can say that when you have a miscarriage at home, it may in fact take several days - or weeks for your body to process the miscarriage. She can explain that the chemical option can be extremely painful for some women, as it induces strong abrupt contractions, and this may be too similar to labour for the woman to want to experience. She can also explain that while surgery is quick, waiting for surgery isn't - and the surgery may take place at midnight, when her partner isn't there to support her.

Cont'd 3.
ideanicci:11/23/2007 10:33 AM NZST

Basically, the registrar has put a black and white outline in front of the patient. The advocate has added the colour and shading.

Once the option is chosen, the advocate can have a further role - to keep in touch with the women and see her post-choice needs are met. Would she like the details of the local miscarriage support group? Has she been given the handbook which explains a lot of what is happening and happened, and has a list of resources to draw on. In terms of future pregnancy attempts, what support is available and what might she qualify for that is publicly funded.

The woman opts to go to the local miscarriage support group and finds, not surprisingly, she is not alone. She meets and makes contact with a couple of women who have the same experience as her. Together they go through the highs and lows of trying again. Together, they all survive and thrive as a result.

Re-apply the situation to a diagnosis of a mother being told her child has a high risk of a genetic disability. Currently, only the registrar is the one who gets paid.

If you think the suggestion above (adding in the Patient Advocate and the support group) has merit, would you support a recommendation for Approach 4 that funding options for this sort of support be explored?

Look forward to your comments.

RE:Are you ready to work towards group recommendations for Approach 4
replymonique:11/23/2007 10:46 AM NZST
Thanks for the morning laugh Brett, (pompous ass of a priest.) lol.
My summary on Approach four part one. Those who value this approach may value control. EG, the ability to manipulate whether or not the pre-born is actually born, based on the knowledge (as differentiated from wisdom) obtainable. This is the underlying similarity to Approach 1. Is this valid? Life by it’s very nature is unpredictable and beyond our control. To quote a famous movie, ‘ The rules are, there are no rules’.
In approaching approach 4, we need to separate knowledge from wisdom. Knowledge seems to refer more to information, and should be presented impartially but supportively by the relevant medical advisors.
“* Provide access to suitably trained people who are able to answer any questions and concerns about pre-birth testing, and *Ensure medical practitioners are adequately trained to advise people about pre-birth testing.” Yes, in that parents must be advised what the tests are for, and what are the physical and intellectual outcomes of any conditions that may be found bearing in mind, this knowledge is always revised and changing and is not infallible. I agree with Ben on supplying the fullest knowledge available.
Some personal experience on the fallibility of the scientific opinion. Following the stroke I had, I was advised by the neurosurgeon I would not regain any of the half of the field of vision that I had lost effectively remaining half blind. I pressed him and he gave me a 1% chance of my vision changing. I have since had substantial gains back. I may not drive again but I have already beaten his prediction.

RE:Are you ready to work towards group recommendations for Approach 4
replymonique:11/23/2007 10:46 AM NZST
Part two
* Ensure information about pre-birth testing includes cultural, ethical and spiritual aspects as well as medical facts.
* Involve families and the public in the development of information about pre-birth testing.
* Ensure communities are involved early on in policy and decision-making about future developments (e.g. PGD).
“how do you think the government should go about producing this sort of information? “
Wisdom is perhaps the most valuable truth. It is my personal and spiritual belief that the truest wisdom is that collective wisdom that is found in a group conscience such as this. I believe that the loving force that we refer to as a higher power or god, (which most of the world believes in, and cannot be disregarded). is expressed this way. I suggest that in any information supplied to prospective parents, they receive the ethical and moral considerations of this group. I refer to both PGD and the current screening available. For example:
Start:
You have been supplied with medical information on the disability that your pre-born child faces. This pamphlet/DVD seeks to provide awareness of ethical and moral considerations. This is because an individual’s decision cannot be separated from the effect of society as a whole. You perhaps have a hard decision in front of you, in deciding whether or not to (allow this child to be born/ discard embryos. It is the belief of some that this decision effects society as a whole. The following are points that members of an ethical committee would ask you to consider on making your decision. This decision will be valued and respected by society.
------ ethical and moral issues, including eugenics, etc etc etc.
End.

Recommendations for Approach 4
commentJoanne:11/23/2007 11:19 AM NZST
Morning all! Interesting to see how early in the morning some of you are posting, especially you Sam, this looks like a full-time job!

I'd agree with Brett that the once-accepted paternalism that witholds information is not appropriate. Clinicians are no longer the only ones able to understand detailed information and patients must be allowed to make informed choices.

In terms of how government should go about instituting a framework that supports approach 4, this is a tough one! For a start, I think that there should be decent funding given to patient support groups to help them be the kind of groups that can provide relational and accessible support that is as unbiased as possible. I'm not sure what the situation regarding this is at present.

Clinicians need to be educated about the importance of communication, informed choice and how to best present information, e.g. how exactly do you explain risk statistics in a way that the average (or 'below average', whatever that means) person understands? This needs to happen in initial medical training, which I know it does to some degree, but also in terms of continuing education, both for GPs and specialist clinicians. It's too easy for the original ideals they embraced as students studying Patient, Doctor and Society to get lost in the years of stress and ever-shortening appointments.

RE:Cont'd 3.
replyJoanne:11/23/2007 11:26 AM NZST
I think the idea of patient advocates is an excellent one. As nicci has brought out, often decisions 'need' to be made within quite a limited time frame, and a patient advocate working as she has described could really help a person make a decision which they are happy with.

RE:Recommendations for Approach 4
replymonique:11/23/2007 02:10 PM NZST
Hi Everyone. I don't mean to be pushy, but I’m home all day, and can devote a lot of time to this. I wonder if we can outline our common ground and recommendations ob Approach 4 as thus:
1. All medical information should be presented impartially but supportively by the relevant medical advisors and open access provided to suitably trained people who are able to answer any questions and concerns about pre-birth testing from a medical point of view.
2. Providing patient advocates as per Nicci’s suggestions.
3.Providing meetings with and assistance by groups with the relevant genetic syndrome, community groups. as a number have suggested.
4. Providing access to ethical/spiritual advisors.
5. The production of a pamphlet /DVD outlining all the ethical considerations we have discussed.
Would this sum up all the mental, spiritual, moral ethical, and community aspects of approach 4.
Cheers
Monique

3 of Sam's thoughts from today's fantastic work ...
commentSam:11/23/2007 03:08 PM NZST
1. I find unbiased information bland, unreadable, mushy and meaningless (have you ever tried to read a Cabiet paper?). I think the choicebook is a much more interesting approach to forming people because it does’t even try to hide the biases. Perhaps acknowledging biases/assumptions is a better than neutrality. Perhaps it’s better to use the language of an advocate for a given approach and then balance it by saying ‘what the critics say’ …

2. Funding community organisations to deliver services on behalf of government is a minefield. The accountability tied to government funding can totally change the nature of these organisations. All of a sudden, community organisations have to implement systems, etc – become bureaucratic.

3. I’d like to see more clarity around what things the government should do and the things other organisations should do. I’d like to see ideas about how government can best facilitate the sorts of things you have all be talking about. For example, Brett thoughts all look highly desirable. However, it’s difficult for the government to influence the behaviour of health professionals and some people would question whether the state has a role in providing spiritual guidance.

A way to help the group move forward?
commentSam:11/23/2007 03:12 PM NZST
Thanks Monique for your proposed group recommendations.

I’m not sure if this will help but may be the ‘rate an idea’ tool will be useful at this point. I’m going to pose each of Monique’s proposed recommendations as an ‘idea’. You will then be able to rate them.

This is NOT a decision-making VOTE but might help us work out were we are as a group. We’re going to move onto Approach 2 tomorrow. If we don’t get to group recommendations on Approach 4 by the end of today, we can pick it up again later. We can also review what we come up with in light of the other appraoches.

Being force to rate an idea may also make you consider more closely why we are making the recommendation, whether it would be practical, if it would be publically and politically and financially acceptable. I INVITE YOU TO TELL THE GROUP WHY YOU DECIDED TO GIVE THE RATING YOU DID, WHAT YOU WOULD RECOMMEND TO IMPROVE A PROPOSAL, ETC.

Whether we get to recommendations today or not, I’m hugely impressed by the work you are doing. I think our work today has gives us all a flavour of what the final stages will be like and some practice at developing group recommendations :)

Proposal 1: Medical iformation
ideaSam:11/23/2007 03:14 PM NZST
All medical information should be presented impartially but supportively by the relevant medical advisors and open access provided to suitably trained people who are able to answer any questions and concerns about pre-birth testing from a medical point of view.

Proposal 2: Patient advocates
ideaSam:11/23/2007 03:15 PM NZST
Nicci's text:
Does anyone disagree with this idea, wish to reshape it, have further input onto it? Could we work on a wording that encapsulates this and forward it as a recommendation?

Something like: To support the provision of clear and relevant information about pre-birth testing, the Group 1 Online Deliberation Group recommends that consideration be given to the establishment and government funding of patient advocates. The role of the patient advocate is to meet with people who have had or are being offered PGD and give them support and information during their decision-making process.

That's a first stab anyway. Fire away with suggestions of any sort.

Proposal 3: Access to support groups
ideaSam:11/23/2007 03:18 PM NZST
Provide the opportunity for meetings with the relevant genetic syndrome, community groups so that these groups ca offer advice ad support

Proposal 4: Cultural/spritual advice
ideaSam:11/23/2007 03:18 PM NZST
Provide access to ethical/spiritual advisors.

Proposal 5: information about the ethics
ideaSam:11/23/2007 03:20 PM NZST
The production of a pamphlet /DVD outlining all the ethical considerations we have discussed.

RE:3 of Sam's thoughts from today's fantastic work ...
replyBrett:11/23/2007 03:20 PM NZST
Mmmm ... well, Sam if anyone can influence the behaviour of health professionals it should be government! But the point is taken to the extent that it is difficult to change the behaviour of anyone. But surely if health professionals hear loud and clear from their customers, which we all are, that might make a difference. Dream on Brett :)

As to spiritual guidance, no I suppose it's not the work of government, although at the moment I struggling to think of a reason why that might be so. What I was trying to say, is that there are many around outside of government and the health professionals who might be able to help. It's a matter of providing the connecting links. That government can do. It does it all the time

Oh sorry.
commentnicci:11/23/2007 03:22 PM NZST
Stupid software. I find that even though I have clicked "refresh" it often doesn't show the posts in the last hour. So I have duplicated Sam. It's happened enough times now that I blame the software not me!

Unbiased information.
commentnicci:11/23/2007 03:26 PM NZST
I agree with what you're saying Sam about bias. Sometimes it's by reading a strong opinion that you go "Hey, that's totally wrong" - and it crystallises in your mind your view. On the other hand, it would be very difficult to offer that sort of polarised information to extremely vulnerable and sometimes desperate people. I think what you might be wanting to indicate is that if unbiased information was offered, it shouldn't be the only information. Perhaps neutral is the starting point but - supplemented with personal stories (or the information from the patient advocate), or contact group information. Often people really want the human touch - the opinion behind the face. How many of us want to ask the doctor: what would you do? We don't want the medical, we want the emotional information. The trick is getting the balance.

Also Joanne and MOnique, thank you for supporting the idea of patient advocates.

RE:Oh sorry.
replySam:11/23/2007 03:27 PM NZST
No probs, it seems a few of us are on at the same time.

Has anybody else got the time on this forum as showing an hour late?
ideanicci:11/23/2007 03:29 PM NZST
For example, I am posting this at 3.30pm. I suspect it will show up as 2.30pm.
If it is not just me, is it possible to get this fixed asap?

RE:Has anybody else got the time on this forum as showing an hour late?
replySam:11/23/2007 03:34 PM NZST
The forum's using NZ Standard Time. Is it really a problem?

POssibly my last post for a while.
commentnicci:11/23/2007 03:37 PM NZST
Sorry, I just get to hop on while the boys are asleep and spew out a slew of ideas and run off back to the land of motherhood and nappies and leave y'all. So one more than this might be it for a while unless the gurglings I hear settle down.

I'm reluctant to rate the ideas because I want to go "but, but, but..." and try and refine them a bit more.
For example, I think a really important part of the ideas that are about "providing ethical/spiritual advisors" and so on is whether or not we support funding for them, and also what do we really mean? If I read that as an official, one of my first thoughts would be: But we have hospital chaplains already, patients can access those. And that's true. They are ethical and spiritual advisors, and they are available. They are also the last person I would turn to. With no offence meant to those who have indicated they do believe in God/attend church of some type.

Is it possible to refine them further before we 'rate' them?

Rating proposals
commentSam:11/23/2007 03:57 PM NZST
Hi Nicci

Good points about rating the proposals - as far as I'm concerned it's just a tool for help us find the common ground and for identifying areas where we might find agreement if we do a bit more work.

So please, everyone, don't just rate, let's hear if you thik the idea's a goer, a potential goer or a non-starter. Why not suggest some new text - you don't have to do this as a 'idea' post - you could just make a comment post entitled Developing Proposal 1 (or whatever), state you concerns and suggest new words. Others could reply to this comment. Additional proposals may emerge.

This could get chaotic but let's give it a go and see if we can develop more effective ways of developing group recommendations.

RE:Proposal 1: Medical iformation
replyMarilyn:11/23/2007 04:28 PM NZST
I would like to suggest a slight change of wording as i think impartially and supportively are both too subjective eg parents are entitled/have the right to sound medical advice and consultation. (the consultation is not quite right but i'm trying to convey that broad medical advice should be available.) I have really loved reading all the posts - one of the problems I worry about though is that this information woudl be directed at just the tiny number of people at what may be a stressful adn vulenrable time for them. these important questions need timefor refecltion - we need to think aobut them BEFORE a decisin has to be made. the is more chance then of peopel making a deicision they ahve reasoned themselves into and therefore they are less likely to be emotinally swayed which i imagine is what happens soemtiems - decisions are made reactively. I think we do need to be putting a lot more effort into keeping people in touch with the science, and making disability something that is accepted as a normal part of the human experience. I agree that knowedge isn't the be all and end all - without compassion or wisdom it could lead us in very nasty directions and the only 'brakes' are the ones we are adult enough to impose on ourselves.

RE:Proposal 2: Patient advocates
replyMarilyn:11/23/2007 04:30 PM NZST
I like this idea very much very much

RE:Proposal 3: Access to support groups
replyMarilyn:11/23/2007 04:38 PM NZST
I think the government can provide information about these groups but i dont think it can provide access to them. in this context however you might like to consider that support be given to the national Carers Strategy which the NZ Carers and I think Min of social development are working on. NZ Carers has an excellent worbsite and publication adn acts as the secretariat for about 45 of these small support groups for particular groups and has done an amazing job i think of providing information and support to unpaid carers. A discsusion doucment was put out recently and i think the national strategy is due for discussion in the middle of next year.

Suggested Link:http://www.carers.net.nz/

RE:Proposal 5: information about the ethics
replyMarilyn:11/23/2007 04:50 PM NZST
yes I like this idea too - we have brilliant writers and film directors and I think a range of dramatised situations could be an effective way of conveying a lot of information in a vivid and palatable way. The process is involved too, so there would be time for script reivew etc and you can also make sure that those playing the parts eg the health professionals have the 'right' attitude. with film you can convey an emotional as well as a scintific aspect - not to mention the use of good animation techniques to describe the science. Humans overwhelmingly pick up information visually and a lot of people would much rather watch a movie than read a pamphlet. It is more expensive initially but when you consider it could be something available on a podcast with additonal written information and links to various support groups (we actaully haven't considered the IT aspect of this at all!!) i think that could be a highly accessible, safe way of conveying complex information effectively.

RE:Proposal 1: Medical iformation
replymonique:11/23/2007 07:54 PM NZST
Re proposal 1, I agree re-wording might be in order, as per your suggestion Marilyn. Full and broad medical advice, with the focus on balance, and not the assumption of an outcome either way.

RE:Proposal 2: Patient advocates
replymonique:11/23/2007 07:56 PM NZST
this idea seems to me to be quite sound and complete. face to face dialogue, with a person who can act as an effective and neutral sounding board

RE:Proposal 3: Access to support groups
replymonique:11/23/2007 07:58 PM NZST
this would seem to me to be a quite sound idea, without much controversy among us.

RE:Proposal 4: Cultural/spritual advice
replymonique:11/23/2007 08:14 PM NZST
I can't imagine that there would or should be much funding/paid advisory services, as we are a secular nation, but as most of the population has some kind of belief that there is something else out there other than us big hairy humans, it is probably important to have a version of this. Even if this just boils down to a line in the resultant material, like, 'you may want to consult an ethical / spiritual advisor, and then provides a list of religious/spiritual groups from Buddhism to ' that religion that worships a small hairy goat in the outer reaches of Gore' (that was a joke.)

RE:Proposal 5: information about the ethics
replymonique:11/23/2007 08:40 PM NZST
To me this is one of the most important things, given that all the other supports and information are in place, that those who participate in PGD, or indeed any kind of decision based on pre-natal screening, are made aware of all potential issues arising from any decision that they make and potential impacts on the wider community I don't think we need terribly to worry about bias in this proposal, just present each view that has arisen from us as representative of the population. This where the voice of those that cannot speak can be heard, ie the pre-born, and those other related groups possibly indirectly affected ie children and people with disabilities. I can imagine that there will be things that are evident that might not be terribly palatable, ie eugenics, but we are not here, to make people feel good about themselves, but to offer a voice of collective wisdom. Here we could reaffirm that any decision will be respected by society. I like the idea of a producing a film, this would be really easily digestible.

Proposal 6: early community involvement in policy and decision making about future developments (e.g. PGD)
ideaSam:11/23/2007 10:09 PM NZST
I'm currently re-reading all the posts about Approach 4 and came across this one. It came from the framing exercises earlier this year.

Proposal 7: govt to help NGO support organisations become better at supporting mother/parents
ideaSam:11/23/2007 10:58 PM NZST
Another from the last few day's of posts

I'm a bit lost.
commentnicci:11/23/2007 11:10 PM NZST
We all have so much to say! Sam, can we have a super summary of where we are up to, maybe a sense of trying to tie Approach 4 up - or is it too soon for that?

CLOSING SUMMARY FOR APPROACH 4: “KNOWLEDGE IS POWER”
summarySam:11/23/2007 11:25 PM NZST
I have to admit I’ve found the last few days exciting … great dialogue and deliberation, and a mighty good go at developing recommendations.

WHAT IS VALUABLE TO PEOPLE WHO SUPPORT APPROACH 4?
* empowers people to make a balanced, reasoned decision
* information from a range of sources/perspectives (medical, lived experience, cultural, ethical, spiritual, etc) about the range of pre-born conditions that supports the needs of the mother/parents
* information the limits of testing (e.g. can’t predict severity of many conditions, reliability, etc)
* up to date expert information that has been ‘translated’ for mothers/parents
* correct interpretation of information by medical professionals that is well communicated to mothers/parents
* coordination of information/support services so mothers/parents know where to go to get support and certain types of information
* information should include material on those normally unquestioned cultural biases that affect decisions
* information about the quality of life people with particular disabilities can expect
* processes to ensure information is balanced, reliable, accessible
*processes for ensuring that mothers/parents can make sense of the information (knowledge) and have access to people with lived experience and empathy (wisdom?)

WHAT MIGHT BE THE COSTS AND CONSEQUENCES OF APPROACH 4?
* information doesn’t necessarily help the decision makers make hard emotional decisions or recover from them
* information may not be wanted or used
* medical information such as risk factors can be difficult to make sense of even for medical professionals
* knowledge may result in further social pressure for mothers/parents to do the ‘right’ thing by not having treatable/disabled children and people being ‘judged’ if they don’t discard/terminate
* knowledge about something doesn’t necessarily change behave
* people may be afraid to ask when a lot of information is available for fear of looking stupid
* could be prohibitively expensive to generate information resources for all illnesses and disabilities, especially the rare ones
* could divert health funding from other important areas

CLOSING SUMMARY: WHAT ARE THE TENSIONS AND CONFLICTS IN APPROACH 4?
summarySam:11/23/2007 11:26 PM NZST
for many tests, only a short period of time is available to make decisions
* information which enables you to make a choice is not the same as ‘information’ that explains the choice you should be making
* how could all cultures and beliefs be fairly represented at reasonable cost?
* the roles for government and NGOs
*funding for NGOs

TOWARDS GROUP RECOMMENDATIONS FOR APPROACH 4
summarySam:11/23/2007 11:28 PM NZST
Not quite there yet but we’ll come back to these …

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

Here's a late addition from Marilyn which could perhaps be combined with say 6 above:
8. Ensure that information (and policy) is developed not just by key stakeholders but more broadly with society. This sort of invlovement will make it easier for mothers/parents to be supported in their decisions about pre-birth testing.

Running list of issues with the forum software
commentSam:11/24/2007 12:03 AM NZST
Here's a running list of your comments about the forum. If you have any comments, please let me know by using the 'moderator help' at the top of your screen or by email me at moderator@bioethics.org.nz. I will add them to this list.

*Change time to NZ Daylight Saving
*Change date format to dd/mm/yy
*Threads would make it easier to order the discussion
* The ability to thread posts.
* The ability to get responses emailed to your email address.
* The ability to preview what you've written before you actually
post to the forum.
* The ability to change a post subject so that a new thread can be started.
* The ability to extract text from a previous post and quote it in your reply.
* The ability to include live URLs within the post.
* The ability to include images (maybe not vital here)
* The ability to opt out of emoticons
* When ideas are rated, show a running tally of how many people have rated. Is it showing 5 because one person has rated or 5 after everyone has rated - makes a difference to the integrity of the rating.
*I've previously suggested a floating panel of the ideas to be rated so they don't' disappear off the page until they should. I suggest another floating panel (my screen has the text occupying a central column, leaving plenty of room either side for floating panels) which shows the key discussion focus that is being prioritised at the current time. For example: Examine the benefits of Approach 3. After a day that may change to Examine the problems with approach 3. Consider the consequences of approach and so on.
* It would be nice to be able to reset your password to one of your choice.
* emailed daily digests of messages may suit some.

LET’S CONSIDER APPROACH 2: LIFE IS A GIFT
questionSam:11/24/2007 12:06 AM NZST
After all your work over the last few days, I hope you all still have some energy left. If you’re feeling a little jaded, I hope you can recharge over the weekend. A number of you indicated you were on for more though, so we’ll start considering the “Life is a Gift” approach on Saturday 24 Nov and plan on continuing through until the end of Monday 26th. We are going to extend the forum so that we can have a good go at collective recommendations at the end – I’ll confirm details early next week.

By the way, I am a little jaded, so I am having a rest this weekend while one of my colleagues becomes Sam. I’ll be back next week.

Let’s now turn our attention to Approach 2: “Life is a Gift”. People who support this approach would not allow any decision to destroy an embryo or terminate a pregnancy because they believe every embryo or foetus has a right to life. This approach suggests that when it comes to pre-born children, we should interfere as little as possible.

As when we considered the other approaches, we’re aiming to appreciate:
* what people who support this approach find valuable about it
* what its costs and consequences of this approach might be
* what the tensions and conflicts are

It's all yours ...

RE:LET’S CONSIDER APPROACH 2: LIFE IS A GIFT
replymonique:11/24/2007 06:48 AM NZST
Perhaps the main tension or conflict with this approach is that it totally disregards the role of the parents particularly the mother from a physical mental and emotional point of view.

Thanks Sam!
commentnicci:11/24/2007 09:22 AM NZST
Working 'til after midnight! And welcome Sam2. Please introduce yourself when you come on board, it would be good to know when we have you with us - and we look forward to seeing our original Sam back.

Introducing 'son' of Sam
commentSam:11/24/2007 10:24 AM NZST
Hi folks as Sam mentioied he's taking a well earned break over the week-end. I can picture him right now lounging by a pool with a pink drink and an umbrella in it, but on second thoughts probably not with 2 young kids to keep him on the straight and narrow.
I've been following your discussions closely over the past few days and have been really impressed by the quality of the thinking, the readiness to engage in repectfull dialogue qnd the creativity of ideas; you should all be very proud of yourselves, especially as this is happening non-synchronously and, as far as I'm aware you have never met before. I think you have demonstrated the value and the workability of online deliberation, an impressive feat in itself.

As Sam has indicated we are moving onto Approach 2 Life is a Gift. As he has indicated we will work our way through the various stages of deliberation beginning with what we think is really valuable about this approach. As Sam might have already mentioned we begin with exploring what is valuable in each approach because it helps us tease out aspects of a perspective which we may not have considered before, especially if it is not an approach we 'naturally' are inclined. Its always much more difficult to spend time thinking through positions that might be foreign to us. On the other hand sometimes when we support certain ideas we can get little lazy on it, we can tend to over look our assumptions, in other words there are benefits all round. One of the key elements in deliberation is opening up to the other, really listening to what others are saying, even if in the end we may not agree we will certainly be much better placed to understand where someone is coming from and surely this makes the possibility of finding some common ground much more likely.
Anyhow enough of me the sun is shinning and the sound of a concrete mixer beckons. I look forward to your conversations.

Life is a Gift.
commentnicci:11/24/2007 02:35 PM NZST
For this approach is the careful consideration that is being given to the right of the pre-born to experience the life it has now has the potential to develop.

Against this approach is that quality of life is not a factor, simply life itself.

A society based on this approach may well grapple with issues of overpopulation (all pregnancies must be completed, and possibly all those who can get pregnant should be encourage to do so), as well as resource deprivation.

It comes down to your moral viewpoint on where does life begin? Is it equally repugnant to you to destroy an 8 cell embryo - as an eight week old foetus - as an 8 month old (nearly fullterm) pregnancy? You probably draw the line somewhere along that spectrum But where? And why?

RE:Life is a Gift.
replymonique:11/24/2007 09:19 PM NZST

Thanks guys. This the approach I hold dear. Being about as rabid a pro-lifer as you can get I thought I could jot down my diatribe. I make reference to abortion, and other pre-natal screening, to illustrate my position. I’d just like to note this process is great, as it gets you to examine not just oppositional approaches, but examine the values you hold dear yourself. I hold the ‘life is a gift’ view through my life experience, logicical processes and some scientific theorising. I believe that life begins at conception, and acting to terminate this process is the taking of life, and should be done only in the most extenuating of circumstances. I do not say never, because some conditions are so grievous, the baby cannot survive till birth, or the process endangers the mothers life. I do not have any particular religious affiliation, and it probably says a lot about the Christian/ womans lib influence overshadowing any such debate that I feel I have to note that. I first became aware of the pro-life/ pro/choice debate on abortion, when I was in my first year at varsity. A debate raged in the varsity mag, and being newly empowered women of the world, I was totally pro-choice. Down with the religious fundamentalist male oppressors who had no idea what it was like to have a female body, and all that.

RE:Life is a Gift.
replymonique:11/24/2007 09:20 PM NZST
Subsequently I saw my niece and nephew born, and became pregnant myself. I went to an early-dating ante-natal scan, convinced they were going to tell me to get lost; I must have imagined being pregnant. This scan was six weeks post-conception, I saw my son kicking with miniature arm and leg buds. For those who don’t have kids, if there are any online, this feels like a miracle similar to witnessing your cat start talking. He was a very active embryo, and as a 3 ½ year old, he is very active. This may not be scientific, but I am convinced some semblance of his personality existed in those early days. I will hold that view until scientists definitively prove otherwise. I am currently 5 weeks pregnant, or three weeks post conception. This week the heart starts pumping, and the neural tube (early brain) fuses over. With all this complexity, is it not conceivable, that there may be a few sparks of human consciousness floating around. Currently in the history of the pro-choice/ pro-life debate, essentially all we have had is religions or movements with a political agenda, setting the public perception of when life is life. Currently string theorists are betting that extra dimensions do indeed exist. The equations that describe superstring theory require a universe with no fewer than 10 dimensions. Trying to get your head around that with nappy-brain is a melon-twister. Since the development of scientific method, society has tended to arrogantly assume that everything has been discovered, yet it is constantly confirmed we have discovered only the beginning, and the commencement point of individual human consciousness must lie in this spectrum. I have lost babies before and after these early stages, and found the process grievous, much as Nicci described in earlier postings. I cannot at this stage in my life conceive that anyone would deliberately take the life of a pre-born.

RE:Life is a Gift.
replymonique:11/24/2007 09:26 PM NZST
From a societal point of view, the sanctity of human life is enshrined in and is the driver of all western societies legal and governmental constructions. Examples from history that echo down the ages include the Hippocratic Oath, and even the US constitution 2nd amendment right to bear arms. The Roe vs Wade decision setting the precedent for abortion law was perhaps the first legal ruling against this. Even then it was initially intended to preserve life, the lives of mothers who might otherwise have died in illegal abortion clinics, unwanted children beaten to death. The abortion rate continues to soar, and we all know about child abuse, the rise of which incidentally correlates nicely with Roe vs Wade (though no causative effect necessarily proven). To respectfully address the over-population issue, as societies tend to become more affluent and better-educated, the opposite has become the problem, with the exception of the current baby-boom blip. It is most likely that this phenomenon will occur in the most populous of countries as their economic status improves. Hopefully there is room for the overflow of these populations to be soaked up while the world population settles to an equilibrium. My view is that any deviation from the life is a gift approach of human life, the sanctity of which is inherent in the human condition, is destructive to society and individuals.

Reply to Monique
commentSam:11/25/2007 11:38 AM NZST
Hi Monique it sounds like you've been doing some pretty solid thinking around the issue of life, and you're thinking has been informed by your personal experience; a pretty powerful statement.

Remembering that we are considering what is valuable about life is a gift my take on your position
At bedrock respect for life, at least human life is the foundation of persons as moral beings. In other words respect for life is what defines us as human. If we reject this we are to some extent diminished. I take this to be your 'global' position. However, if I'm reading you correctly there is a 'practical' element to your position. By practical I mean you recognise that there are some situations in which terminating a foetus or an embryo can be justified, but only when other life might be threatened. So unless we have ean extremely good reason or reasons we should preserve life at all costs. This is what some people would call situational ethics. It recognises that context matters, that we need to be guided by the particular as much as the universal and that we ofter experience the two colliding and it is in this space where many of out most difficult and pressing moral conundrums emerge.

You also have some interesting things to say about how we may be in danger of narrowing our understanding of Life. That our current thinking, based as it is on a certain conception of science may have drawn us into a very matertialistic view of existence. The effect of such an attitude deprives us of a far richer and more comprehensive appreciation of ourselves as not having encompassed everything there is to know about life and consciousness.

The other aspect you have higlighted is a social and I would suggest a political one. Can we as a society continue to condone - except in certain situations - the kinds of abortion rates we have witnessed over the last couple of decades. Have we thought through the implications of what this will mean for population replacement etc.

Monique has presented us with some pertinent questions and has raised some issues that go to the heart of this topic of pre-birth testing. Obviously when we come to consider the consequences and actions of approach 4 many of Monique's comments will be very challenging in terms of what recommendations we might make.

I want to thank you Monique for presenting such a cogent and poignant introduction to life is a gift. I'm looking forward to the responses.

RE:Life is a Gift.
replyKelly:11/25/2007 04:20 PM NZST
Re: Life as a gift. To be able to recreate life is indeed an amazing thing - but many prospective parents do not realise that nature can get the replication process wrong. Nobody talks about the 'what if...' scenarios when you are contempating a pregnancy. I wouldn't class myself as extremely pro-life nor am I extremely pro-abortion/termination. I just feel that each individual case needs to be viewed as just that (individual). I am quite a post-structuralist/modernist (i.e. I view life in many shades of grey; not just one defining way). And I guess my experiences as a nurse and my personal experience of raising a child with a disability has shaped this. Talking among friends reveals that not everybody would want to be raising a child with a disability. And although I acknowledge this honesty, I believe that my daughter has just as much right to be here as their children do. Not everyone is readily accepting of 'difference', and that's just reality (whether we agree with this or not, discrimination against the disabled occurs).

RE:Life is a Gift.
replyBrett:11/25/2007 07:17 PM NZST
Apologies, I thought I was going to be able to take part this weekend, but the new spouting has kept me occupied. And it been hot. Phew - 35 degrees at our house!

I'll catch up on Monday. Looks like there are some very interesting posts.

Brett

RE:Life is a Gift.
replyKelly:11/26/2007 09:30 AM NZST
Goodmorning everyone. Just been thinking about this some more and wanted to explain myself more fully. I think I sit a bit on the fence with this approach. But in having said that, I do personally believe that life is an extremely precious phenomena - sometimes all too short. And I agree that a lot of people forget this. Being able to conceive three times naturally (despite waiting for IVF initially), and deliver three gorgeous beings is truly a miracle. And so what if my daughter has been 'repackaged' differently to our sons. I don't 'see' her disability until we exit our home. Unfortunately society has created a very 'ableist' environment, and until we change this parents will view disability as a negative (too difficult to overcome and deal with). But again, judgement is all to easy. To be honest, my daughter's difficulties are sometimes very frustrating and painful for all of us (her included) - so therefore it has to be an individual decision. After all - the parents in reality are the ones who need to have enough strength in order to deal with this 'lived experience' and guide their child positively through their life.

RE:Life is a Gift.
replyBrett:11/26/2007 12:06 PM NZST
As Nicci said it easy to get lost in this discussion, at least I find it is!

An amazing post Monique, thanks. I agree and I don't. Or perhaps I share your uncertainties.

It is certainly true that the materialist scientific view, which has been sneaking up on us since Copernicus, can strip all humanity out of a discussion such as this. The belief that *all* we are is the molecules of which we are made.

The value of this approach is that the wilder excesses of how this technology can be used can be controlled. The government can pass laws that prohibit the use of certain procedures, and try to educate people in the dangers.

But does it work? We all know what happens when a government bans something, such as alcohol. In this case we might start to get things like "transplant tourists" which is fairly harmless, but at worst we might get, as is now happening in Vietnam, a severe skewing of the gender ratio following the abortion of female foetuses, and the result of that, it is feared, will be that there will soon be trafficking in women. The point I'm trying to make is that individual decisions can mount up and have profound social consequences.

If I believe that the Cosmos/Universe is filled with purpose and meaning, the this issue becomes even more complicated. If I feel that the downside of our materialist scientific world view is that we have dis-enchanted the world and everything in it. Then I have a problem. Then life truly is a gift and how can I end it. Difficult! Especially for me caught uncomfortable between my scientific training and my Quakerism.

One last thing which for me bears on this approach and the previous approach, is what are the rights or obligations of this generation to take care of, or impose or maybe quite arbitrary preferences on the next one. Is it alright for us the select the genes for the next generation?

Brett

Life is a gift - the good stuff
commentBen'80:11/26/2007 12:21 PM NZST
Right seeing as my IT system is down it’s time for Ben’s opinions about so called ‘pro-life’.

Monique – full credit to you for putting your beliefs out there. And personally, as a rabid atheist (born and raised), even more cred for having your ‘pro-life’ opinions outside of a religious context. It’s probably a mean and uncharitable thing to say, but I’m FAR more likely to listen and consider pro-life arguments and points of view when they exist outside of “God said so”. But enough of the tangent…

I believe that Life is a gift, it really is. And I’m very much all in favour of letting people live (ie pro life/living). However there are some fundamentally flawed areas of this policy. But first the good stuff.

What I like from approach 2:
• Supporting and valuing people with disabilities
• Helping people with disabilities to participate in society in it’s fullest.
Excellent stuff, and things that should be encouraged. Everyone who’s in our society should get the same opportunities. That may not be true, and perhaps it’ll never be true. But it is something we should strive for.

Stuff I don’t like is going to need it’s own post. More to come…

RE:TOWARDS GROUP RECOMMENDATIONS FOR APPROACH 4
replyMarilyn:11/26/2007 12:49 PM NZST
Sorry - just to add to your excellent summaryre approach 4 and probably for all apporaches is that we mustn't only provide information to those who ahve to make decsions - wheter you are childless from choice or circumstance, are old or young does not preclude your being able to have a say in the society you want to live in or that your family may live in. Men don't actually bear children but that has not stopped them having 'rights' over women's reproductive choices since the day dot, for instance. Sound ethical considered decisions (ie the ones that most people are likely to be happy with and not have regrets ) are more likely to be made within a wider context not just at the point when a difficult decision has to be made. What society accepts or rejects as a whole is crucial and it shouldn't just be the burden of a few people who're at childbearing stage, so I repeat that whatever is available for individuals or couples should also be available to the wider public and we should ensure wide particiption. I would not liek to see the same situation develop as over abortion fro instance where it was banned but there was precious little help given to those who wanted them for whatever reason.

Life is a gift
commentMarilyn:11/26/2007 01:30 PM NZST
first please excuse my shocking typing in previous posts - i can spell but I can't type! That an uplifting and positive response Monique and one I strongly empathise, with though I do not see any divide between 'scientific' and pro-life thinking. I have met far more scientists who were profoundly aware of the miracle of every day life than others are. But equally, I do not accept that human life is any more miraculous than any of the workings of the universe. What if we are just chemical and electrical responses - isn't that simply incredible? That such a complex and beautiful universe has evolved from basically the simplest elements, hydrogen, to me is so far beyond the human construct that I couldn't begin to impose a human-based order on anything beyond trying to understand the impact that my decisions have on the planet at this time and place and hopefully making the right ones. Defining when human life begins is a fruitless task - like trying to work out if stromatolites are animate or inanimate objects! to all intents and purposes they're rocks but their chemistry changed the atmosphere of this whole planet enabling you and me to exist and apparently they share some sort of chemical transmitter which is related to seratonin! However there a qualitative difference between life ended at conception and, say, a still born child. I honour your humanity, and I am glad that currently medical science is strongly directed at supporting that view, but I do not believe in human life at any cost. I personally want to be able to choose euthanasia rather than continue, as my father has done, in a dementia befuddled state and i think it woudl be bizarre if we accepted one form of "life choice" without the other.