Exploring Approach 2: Life is a gift

I think one of the important values here is that we follow a precautionary approach, as there are so many unknowns, such that any decisions are taken very slowly.

It is clear that they do not wish any life to be destroyed, even if there is the risk of disability, which means preserving all embryos and not requiring such testing at all. This has parallels to abortion debates, but expands beyond simply whether one is ready for a child, to whether one is ready for a child with the possibility of disability or certain characteristics.

@Jenna Robson I support your idea but I thinks tests needs to be done so the parents and family know in advance the disabilities the child will possess. It will be a surprise and disappointment for me If a give birth to a disable child without knowing the type of disabilities he/she will possess. Some parent will consider abortion when undertaking tests and that depends on how they value life. It all depends on individuals choices and the mandatory tests for women who wants to have a baby. This topic is too complicated to come up with a conclusion when dealing with how people value life when it comes to disability.

On a more personal level, just thinking about it, I’m not sure how accurate this sort of testing applies to congenital heart defects (one of which I was born with). But if testing were possible, I don’t know what my parents would have done. So of course, I am glad I was born, but I have always thought that the physical challenges it posed growing up led me to be the resilient and adaptable person I am today. So I can see that there is some merit in this view, as it runs the risk of a uniform society with reduced diversity of thought and experiences.

I think you make a very good point. Although I always support the rights of mothers/parents to choose, I do worry about where the line should be, who gets to decide, and whether we undervalue diversity of ability.

From my own view point, I see life as a gift from God and is more valuable and every child has a right to live. Even if born disabled, it was God given. It could be so stressful for a family to take care for the disabled child but tests needs to be done at an early stage to prepare for what's coming. Destroying an embryo when discovering the disabilities the child will possess is the same as destroying a healthy child. All children whether it be a healthy child or a disabled one  needs to be part of a society and be given the same love and affection.

Financial costs involved in caring for the disabled could be a hindrance in the family and this is when government intervention is needed. Government’s main aim is to provide better services to every citizen. All infrastructure build has to be socially inclusive meaning disabled citizens can have easy access to all facilities constructed by the government. Also, the government needs to allocate funds and support system for families with disable child. If government support and infrastructure are good to take care for the disable ones, people will value life as a gift and see everyone as equal. To support this approach, it all comes back to how people value life in situations and circumstances surrounding them to care for a disable citizen.

Thanks @John Penny for looking at things from a perspective you don't agree with and finding a couple of areas of common ground. This is what deliberation is all about and is also why we're using the appreciative question about value in this exploration first - this is a way of 'listening' to people who see things differently, something that our society and our politics is not good at. That's why I'm going to 'hold' our exploration for a while in this value/appreciative space before moving us onto the question about consequences, which most of us will find easy as critiquing is a strong part of our culture.

@Jenna Robson, your reflection on your personal history raise some excellent points about who should be born and how we value people. And I think you are right that at least some supporters of this approach would urge pre-caution. For example, IVF is actually quite a new technology. The first IVF baby was born in 1978 and she is only 41 now. No side effects were anticipated but we may not know for sure until a couple there have been a couple of generations of IVF babies.

I think one of the things that is most valuable is that life is a gift A gift that should be loved, respected and cared for. There is value and potential in every life and we can never realize this life is terminated as a result of pre-birth testing.

It comes down to the point that every life has the right to live and we should not play judge and jury.

Good points @Lillian Smith about people who support the life is a gift approach valuing really important things like everyone needing love and affection and the need to support people to care for disabled children.

Great to acknowledge Lillian's post and very nicely put, @Margaret Aulda

I think that one of the things people who support Approach 2 may be concerned about is the risk that, following any type of testing, a parent may consider aborting their baby. By ensuring that parents do not have the option to abort, this forces them to confront the reality of any of their newborn child's health issues upon the birth. I think that those who support Approach 2 believe that this will force parents to accept reality and care for their child, regardless of the child's health or developmental status.

EDIT: I re-read the choicebook more closely and saw that testing is fine as long as as there is no discarding of embryos or abortion of fetuses- apologies! I've changed my point slightly to reflect this.

Summary of things a supporter of Approach 2 values

Here's a quick summary. Please let me known what needs to the added, deleted, modified if I've missed something or got anything wrong.

• A right to live - every life is valuable

• the principle that all people are equal, and should be regarded as equal, regardless of their physical or intellectual abilities

• Policies that uphold religious, moral (and perhaps other) beliefs such as embryos having souls

• Support for disabled people and their carers so that they can lead a good life

• A precautionary approach given that life is so complex with many unknowns and tests that don’t always give correct results

• Being able to prepare for the arrival of a disabled baby

• Everyone being loved, respected, cared for and included in society

You've been working hard and very well together so let's put a line under the question of what a supporter of this approach values and move onto the questions of cost, consequences, tensions and conflicts.

I'm really impressed by the amount of ground you've covered in a very short time and I hope you feel that you are learning things from each other about each other, about pre-birth testing and about this deliberative dialogue process.

What could be some of the intended and unintended costs & consequences of doing what this approach suggests and what tensions or conflicts would have to be worked through for this approach to be successfully implemented?

I think one of the tensions will be the conflict between the foetus' right to life and the right of women to have control over their bodies.

And that issue comes down to different world views. Partly that's religious - people of religion will often see this issue differently from people who are not religious.

But partly it is also a gender issue. This is an issue that impacts women far more than men because it is women have to live with the consequences of the decisions far more than men do. And that's both ways - having to bring up a child that has severe difficulties, or living with the emotional impact of having an abortion. Not that fathers aren't impacted, just that they aren't impacted as much, partly because the foetus is not actually in their body, and partly because it is women who do the majority of the child care.

Yet, oddly, it is primarily men who make the decision about what is and isn't allowed for pre-birth testing and abortion, not women. It is (predominantly) male politicians who tell women what decisions are open to them about their bodies and their futures and their emotional wellbeing, and what options are closed to them.

One of the things I like about this process is that it gives voice to far more people, especially women, the very people who are most impacted.

I agree John, the majority of these decisions should be made by women when it comes to the direct impacts. But any that relate to societal impacts (e.g., reduced diversity in schools resulting in weakening soft skills) should be made by all.

Actually that's a very good point you make on the social impacts. I think you're right that everyone should have a say on those broader social impacts.

The personal impact on mothers (and fathers/co-parents and families) is strong and immediate and personal. The social impact on everyone is less immediate, and possibly not felt as strongly, but can nevertheless have a significant impact on society and the world we live in.

That means there is another potential conflict between the personal decisions that affect mothers (and fathers/co-parents and families) and the social impacts that affect everyone.

Exactly, decisions made surrounding this issue will have long lasting emotional impact on the mother. Either it be raising a disabled child or involve in killing your own flesh and blood. It is really a complicated topic to discuss and involve with

The obvious tension is the religious one and to be honest I don’t know how you work around that. How do you impose one persons beliefs on another, especially if the person who is being imposed upon doesn’t share that particular perspective? Why should an agnostic person care what the religious perspective is? All the engagement in the world will still struggle against years of ingrained religious or cultural beliefs. This may be a case where if a policy contrary to this perspective was enacted that the usual normalisation process wouldn’t really apply. Personally, I think implementation would just have to be a cold hard “just do it” and deal with the outcome. In saying that, NZ is so diverse now that the outcry may not be as visceral as it might have been 20 years ago. Maybe part of the engagement strategy could be focused on what a NZer is, what are their beliefs, what are their values. NZ was founded on Christian values (GOD defend New Zealand and all) but I’m not sure that is who we are anymore. We are so culturally and religiously diverse that maybe the nay sayers aren’t the majority anymore? Maybe the traditional religious perspective isn’t what “we” believe. Maybe there is wiggle room? They might still be the majority but I think there should be some work done to find out if that is or isn’t the case in contemporary New Zealand.

@Daniel Brunt its true that NZ is becoming so diverse that reaching a compromise on issues that test ethical and religious values, to me is work that will take some time.

From a cost perspective, the greatest impact will be around care provision for individuals with disabilities, especially if it is no longer acceptable to abort on the basis of this. However, this will add tension to existing population growth challenges, as well as our high prevalence of family violence. In terms of preserving all embryos forever, this would lead to exponential growth in storage costs.

Implementing a policy fully aligned with Approach 2 may force others to do things illegally, and that can place further burden on the tax payer when things go wrong.

A tension around implementation is the way in which we think it needs to be done. For example, do we need a referendum, and how much of the design do we leave to the respective agencies versus co-design with service providers and communities?

Adding to your point about cost, I don't believe it's possible for the government to provide full care for individuals with severe health problems to the point where the child and their family are no longer under a time/financial burden- even if aid was extensively funded, things will just be more difficult for these families due to having to visit a doctor regularly, parents having to take time off work, and the like. Therefore, I think that this approach will breed resentment in people who believe they had the right to terminate their pregnancy or reject some embryos, and whose children are now suffering, not only due to disabilities and/or health problems, but also due to time/financial issues caused by the need for ongoing treatment.

@Izzy , to give an insight on your point, I would suggest the government in partnership with the private sector establish a charity sort of organisation to care for a certain percentage for a disable citizen to meet health costs.

I think your point about Approach 2 forcing people to do things illegally is a good one. One of the arguments for legalising abortions is that, when they are illegal, women still have abortions, they just get them from unlicensed and unhygenic practitioners who can't do it properly. That puts the mother's life and wellbeing at risk. So, the argument goes, better to do it properly than badly.

If testing and abortions are not legal, some women will seek them out anyway, especially those who are at a high risk for passing on genetic disorders.

Making it illegal won't make it stop. It'll just mean that it happens illegally and (often) unsafely.

In relation to the religious question, I can’t help but think these issues are still an extension of existing abortion policies, which is legal in certain circumstances. Earlier testing is an enabler, as it provides more accurate information for families in these situations, independent of their eventual decision. Aligning additional policies to Approach 2 will cause tension with existing laws. Agree that we probably need to conduct a very broad-reaching survey to understand the proportionality across the four views.

Lots of good insights here, John, Jenna, Daniel and Izzy, and I'm very interested in your comments about our political processes.

This engagement process comes out of a deliberative democracy (DD) tradition and has very different assumptions and goals to traditions from representative democracy. Rather than a winner takes all approach, DD emphasises finding ways forward that most people can live with. And it doesn't assume that people know their preferences, especially with respect to complex issues, which means that simply asking people what they think in a survey or submission process isn't that helpful. DD assumes instead that people need to learn about and discuss issues with diverse others before being able to make a judgement. Under these conditions, the empirical evidence shows that normal people are often able to find broadly acceptable policies, even on issues like abortion.

The magic then is finding out how to get enough people (and deciding how much is enough) to participate in that conversation, which I guess is part of the reason we are doing this course.

Now, it goes back to how policies are created. If abortion is legalized, did policy makers involve church leaders to participate in policy making? Did they consider the religious aspects associated with abortion before coming up with the policy? Sensitive topics like dealing with life as to be dealt in such a way that it considers all aspects of life. I strongly recommend that its time there has to be a public-private partnership in place so government leaders, community leaders, church leaders and business owners need to work together in coming up with decisions and policies surrounding issue to deal with life.

The obvious conflict will be in the context of religious beliefs that every life is a gift from God and that termination of a fetus/embryo as a result of pre-birth testing is considered murder. It eliminates the value of love and respect for human life. Will a conclusion or compromise ever be reached, I doubt it.

However, through this approach of keeping life, in my opinion is that appropriate facilities and help can be made available for parents who through pre-birth testing have identified medical conditions or disabilities with their unborn child. 

But the question is will every family have access to government help and facilities, let alone pre-birth testing that will in the first place identify the issue for the mothers/parents.  Will families be able to afford the long term financial cost of caring for children born with severe medical condition and disabilities? I think there are still uncertainties that need to bee addressed.

In the context of NZ, funding won’t be an issue as it’s a developed country. We can see clearly from how the road systems, buildings, public transports and facilities are all constructed in  such a way  that disable citizens have easy access to everything.  I’m not sure if there’s a support system in place for the disabled citizen as I’m not a citizen here. But I strongly believe that if the issue is brought forward with the pros and cons surrounding the approach, the government will definitely establish a support system taking into account that life is a gift and everyone has the right to live.

On the other hand, religious aspects, moral values and cultural aspects surrounding this approach (Life is a Gift) will have tensions when individuals give their own views. If religious aspects is to be considered, we’ll have strong debates surround this approach. As mentioned by Jenna, abortion is legal in certain circumstance which means a woman can terminate a healthy baby if the mother has health issues for instance. I would agree with that. But, what about teenagers and young couples who terminates pregnancy because they realise they’re not ready to take care of the child? Where will we draw lines in such circumstance if we are to see life as a gift?

There will be a moral breakdown in the society. There won’t be compassion, generosity, respect and love for each other in the society. Religious citizens will value life while those that are not religious wont value life. Personally, I see this as a sensitive issue as we a dealing with life which is far more precious.  It now falls back to the government, community and churches leaders to deliberate more on the issue to come up with a decision that will go hand in hand when considering all aspects surrounding the issue.

I think you make some excellent points Lillian.

There is one point thought that I don't agree with though. You mention that if there are more options to terminate pregnancy that there will be a moral breakdown in society and that religious citizens will value life and those who are not religious will not value life.

As a non-religious person I disagree. I think that non-religious people do value life. In fact, I think we put a very high value on life. But I think we look at it in a nuanced way, because (many of us) believe that we have to balance that with other values as well. For example, we need to balance everyone's right to life with women's right to have control over their bodies and parents' right to chose whether or not they have to make personal and family sacrifices to raise a child that will need more help and attention than most people expect.

There are no easy answers to those dilemmas. Many non-religious people believe that both are important. Which is why this is so difficult. There are no easy answers.

Thanks Jenny. Religion in the context of this issue is individuals seeing life as God-given and has value. Whether you are faithful in attending church and more religious or not, as long as you belief and know that life is valuable and is only given by God.

Exactly, there are no easy answers to this and I support your view.

Let's finish up our exploration of Approach 2 now

Thanks everyone for the quality of your communication and for covering so much ground so quickly - we spent 2 days exploring this approach, something that took 6 days when this process was run with the public.

Going fast does have some advantages - lots of posts in a short time create energy and momentum, and the rapid sharing of ideas and perspectives can help form supportive relationships between participants - yes, this can happen online! A disadvantage however is that there is less time for people to reflect on what's being said, on what they think about it and what they're going to say next. When the balance between speed and reflection is right, the discussions are very rich and innovative thinking can occur.

I would normally write a summary of your day's work to close it off but I'm not going too as I don't think it's necessary for the purposes of this simulation. I'll start a new thread for the next stage of the process - starting the search for common ground - shortly.

Hey everyone, I deeply apologise for being late. I have just been a little bit recover from cold. I wish to contribute some ideas to the group as well. First of all, I agree with @Sylviani Leku @Izzy that religions, morality and norms can influence future parents' decisions on abortion because some people might feel bad after abortion. This bad feelings can be a memory which some might decide to keep embryos.
Also, I have seen some videos recently talk about word "disability" with people who are born with down syndrome. Those videos explain that down syndrome is not disability, it is the unique genes. The down syndrome people have their unique skills including dancing and performance.

Therefore, personally, the approach 2 not only focuses on social perspectives but also economic perspectives that some embryos should not aborted based on the pre-testing birth since those children also have their own unique skills.

Regarding unintentional outcomes, if the government encourage people to abort the embryos because of disability, this could be seen as the immorality and influence on people's decisions. To me, if do so, it might not far different from clone DNA because people started to select the preferred embryos. However, pre-testing birth does not mean it is a bad idea but the government should be aware of their power-influence on people's decision. To sum up, it is good to have pre-testing birth but the government should not tell people to keep or abort particular types of embryos.
In terms of cost benefit analyse, there must be supports from the government to all children. But for those children who live with physical disability or down syndrome, the government might need to invest more. However, the benefit of doing this can contribute to promoting morality and diversity of people and skills.