Exploring Approach 1: My choice, my right

I can imagine that aligning to this approach will mean costs for the taxpayer, but in order to resolve access issues, it will need to align with things such as the community services card, and involve a well-thought our communication strategy to ensure people know what’s available and what they’re entitled to.

The extent to which testing during early pregnancy is offered will impact the extent to which there are possible options for whether to abort (assuming it I see aligned to existing laws around how many weeks). This is further impacted by what is legal, but privately funded, versus what is government funded, and in what circumstances. These will thus impact the overall costs on the taxpayer, and individual costs for mothers/families wishing to conduct certain tests. Likewise, if demand is not predicted well, and no caps placed, there may be funding issues that arise.

I do not think it will be a significant risk that a gender bias is created in New Zealand, as we do not have a one-child policy, and I can’t imagine we will go so far as allowing complete freedom through early testing - only providing details on gender when it relates to gender-specific conditions.

I think an important thing to consider here is that many mothers are having babies later, which increases the likelihood of wishing to test first. I’m not sure if in these circumstances we can test for all things in New Zealand, as I have heard people sending this to the US. Ideally, at least from the perspective of those aligning to Approach 1, such a service should be provided here.

What are the tensions or conflicts we would have to work through for this Approach to be successfully implemented?

I don’t think that testing is a controversial subject, at least not in New Zealand. In fact, I’m surprised that access to testing is not already universal here. And I don't really think that funding it would be that controversial either. (But maybe other people have different views?)

But where I do think that New Zealanders will have the biggest conflicts will be about when it is and is not acceptable to abort the fetus. Is it ever acceptable to abort? Is it acceptable to abort for disability? If so, what types of disability? Deafness? What about intellectual disability? What about gender (that’s not associated with a genetic condition)? What about the propensity to heart disease?

People have very different opinions about these, and they are often very passionately held opinions.

Although I agree with you on the most part, I do think that removing restrictions on PGD testing would also be controversial here- particularly considering the popularity of media critical about 'saviour siblings' like the book/film 'my sister's keeper'. I think a lot of Kiwis would be critical about how PGD could be used in ways that would violate the rights of the saviour sibling.

Yes, that's a good point. I think you're right that that's a difficult area that there will also be a lot of disagreement, and very strongly felt opinions by some.

Approach 1 is about and promotes individual choice and rights. It is the mothers/parents right to choose or not to choose reproduction. It comes down to an individual’s ethical views about life and what is right and wrong. If mothers/parents have the right to choose either to continue pregnancy or terminate it, than it will comes down to the question of what defined as life, where ethical and medical views come into play.

Mothers/parents may have the right to choose but what should their choice be influenced by, should their choice be as a result of medical reason and is the choice ethical, especially when ending pregnancy. Tension will be around whether the choice is ethical and the definition of life and when life begins. Tensions will be more ethical than medical and will boil down to one’s own belief and personal opinion. The government can establish guidelines and information to that is medically proven but the final choice will have to be an individual.

Welcome to the group, @Margaret Aulda , and thanks for building on the ethical dilemmas that John and Izzy have been discussing.

It is true, I think, that governments often present guidelines and information that purportedly are based on medical/scientific facts but underneath the 'neutral' language are values calls - whose facts, which interpretation, which criteria, who benefits, who doesn't, etc? While Approach 1 might suggest that individuals should decide such things for pre-birth testing, governments and their experts routinely make values calls in all sorts of areas. This deliberation process is about widening who is involved by giving citizens an opportunity work through the issues.

Keep up the good work, everyone!

Ethical issue will be an issue when taking this approach. If a mother is required to take all pregnancy tests whether it be IVF, PGD, embryo selection, abortion or tests during pregnancy, ethical issues needs consideration. In a society where people value their norms and beliefs, the practice of some tests will be against their cultural beliefs even if it is mandatory.  In the context of New Zealand, it's a multicultural society where people from the Asian, Maori, Pakeha and Pacific have different opinions to the pre-birth testing when considering cultural ethics and values.For instance, if I take the IVF while in NZ and go back to my home county, the society will see my child as someone out from the space. But when looking from a different perspective, mothers and citizens will understand why a woman has to undergo tests. It all comes back to individual choices citizens make and how they see the value of each tests.

The first challenge that comes to mind for me is taking into account the significantly complexity of all different conditions, genetic and non-genetic, when symptoms appear, and how easily the test are treated, and converting this into ‘principles’ that can adapt to when some of these factors change over time. In addition, this will need to ensure that funding requirements and costs on government and individuals are relatively stable over time.

As technology advances, and more testing becomes possible, we will also need any specific laws and regulations to be responsive to this, so that there are minimal ‘loopholes’ that go beyond what is considered acceptable or place additional cost burden on the tax payer.

Another tension would be around pre-pregnancy testing. I recently read an article where one women was not informed of her father having Huntington’s, and now faces a 50/50 risk of her child, already born, of also having the same genetic condition. Had she known earlier, she claims claims she will have aborted. In this context, the tension is around where testing ends, and who bears the cost.

Another possible tension around implementation relates to who delivers the services and the funding model chosen. Strong government involvement can reduce the risk of non-compliance, but at pehaps reduced cost-efficiency.

Lastly, it is hard to ignore matters of gender selection. The tension will be around how far we go in allowing choice here. From a population growth perspective, there can be some benefits, if, for example, you have one daughter, and now wish for a son (and only want two kids). But this gets complex with combined families, families with twins etc.

I think people may see this approach as unethical procedures, but having this as a first choice before a pregnancy is a good choice for individuals/parents. At least they could prepare better. Many believes that children is a blessing, no matter what condition they may have or whatever may it takes. I believe that values too. However, if I have to bear and raise a children with such conditions I need all knowledge and preparations to make the children could live longer and in good condition.

This approach is a way to develop people awareness to living with children with certain conditions. Therefore, it has to involve people values about live itself. In addition, it is essential that access through this information and tests is adequate, equal and equitable among all individuals. Inequality in accessing this informed choices will lead to another conflict.

In addition, it is important to place the test procedure in right stage due to people values about life. For example, it is before pregnancy, hence the individuals/parents could choose whether they still have desire to have children despite of their bad genetic conditions, or during the pregnancy, which could provoke people opinion about the bad result could lead to abortion. I think people may prefer to have this procedure in the stage of preparation of pregnancy rather than during the pregnancy. Therefore, in my perspective, right timing to place this procedure will influence the success of this approach.

Bravo @Sylviani Leku for starting the discussions in your subgroup. You make some excellent points about the timing of testing, access to testing and testing allowing mothers/parent to better prepare for and support their baby. I'm sure others will pick up on these and identify other consequences and tensions.

A point of clarification. You rightly note that tests can be conducted before pregnancy (IVF with pre-implantation diagnosis) and after a pregnancy has started (e.g. pregnancy test, blood test, ultrasound, etc) and that before pregnancy testing is different in that the test results will not lead to a decision about abortion - although some people believe that not implanting human embryos is murder too. However, women in NZ who have before pregnancy testing will also likely have after pregnancy testing of some sort too and the result of these tests could reveal problems that could make mothers/parents consider abortion. This is why this deliberation is about both before- and after- pregnancy testing.

Hi everyone, I’m not sure I can see all your posts (only have access to an iPad) - unless only Simon, John and Sylviana have posted?

Nonetheless, I shall respond to the two questions below :)

Hi Jenna, I'm not sure what this forum looks like on an iPad - I'll check tomorrow - but I can say that just about everyone in the group has posted so it sounds like you are missing quite a bit. A lot of the posts are actually 'replies'. Can you expand any of the posts to see replies?

Darn, my first posts will be a bit out of sinc :). I can’t expand anything, all I see I say grey boxes that do nothing. I couldn’t find an app to download either. I am on holiday, so no access to a PC for the next 10 days.

I know that in my intro I said I had no real connection with this topic but my wife reminded me that I did (maybe she should be on the course). Anyway, option one is actually my preference as a policy position. Not that I'm an advocate against the government telling us what we can or cant do to our bodies because to some degree it already does, but I'm In the camp where people should have the option to choose in this situation. So, a family member of mine has a condition that is usually genetic. This seriously affected my me and my wife's decision to have more children. Our family member was tested and it turns out it was a spontaneous event and not genetic. Unfortunately, by the time the results came through we were probably getting a bit old for children. My point being that the testing for us was a significant factor in having more children. I guess where this gets confused though is not really the testing but the "what next". For us we didnt have more children, had we been pregnant at the time and the results been different, what would we have done? I dont really know to be honest. I think testing is harmless, its the next step where the controversy comes into play. My biggest consideration from a policy perspective is how do make the testing available for all. The actions following such a test is an argument for another forum.

Obviously having information can lead to further actions. I guess we have to think about whether or not the public are mature enough to have this information (and who decides that) and then how do you (or should you) regulate the resulting actions.

Summary of costs & consequences of Approach 1

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.

• Promotes people's freedom of choice regarding their future

• Enables parents and families (and wider community) plan prepare for the arrival of a child with disabilities

• Decisions to abort may be based on societal biases about gender. This has been the case in China but may not be such an issue in NZ

• Unequal access to testing services if user pays and with negative consequences for poorer communities

• Mothers making poor decisions without proper advice from medical and other experts that may affect their health and well-being

• Demand for tests that are not provided in NZ (perhaps to keep costs under control)

• Increase demand for testing as more women are having babies when they are older

• Public controversy if restriction on creating saviour siblings, etc are lifted

• Some decisions will be based on false test results

Summary of tensions and conflicts for Approach 1

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.

• Producing the right information for a very diverse society

• Delivering the right information in a way that works for the people that need it

• Adequate funding to ensure the right information is produced and delivered in the right way

• Adequate support to enable families who do want to keep a disabled child to cope

• Ways to ensure equity of access

• Criteria for abortions

• Definition of when human life begins

• Whether to test if there is no treatment