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Exploring Approach 1: My choice, my right

S Simon Public Seen by 143

According to people who support Approach 1, mothers/parents should be able to make their own decisions about reproduction.

Please focus you posts on the questions:

  • What could be some of the intended and unintended costs & consequences of doing what this approach suggests?

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

Also feel free to note additional things that a supporter might value in your posts.

In addition to responding to the focus questions, where possible give reasons for what you say and also please respond to / query / build on other people’s posts.

We’ll work on exploring approach 1 until 9.30am, Wednesday 20th. After that, each subgroup will explore a different approach and, on Friday, will start our search for common ground on what policy actions we might recommend as a group.

S

Simon Mon 18 Nov 2019 11:22AM

Summary: Things that are valuable to people who support Approach 1

Listed below are the points you recorded while discussing Approach 1: My choice, my right at the EGOV503 face-to-face workshop on 11 November. Points made at the table groups have been consolidated into a single list. Feel free to note additional things that a supporter might value in your posts today or to comment on or ask questions about what was meant by any of the points.

  • My body is my authority

  • Empowering individuals

  • ‘Right to choose’ - consult who you want, state doesn’t interfere, act on your own values

  • Pro choice/freedom of choice

  • Freedom to choose & be responsible

  • Freedom for the mother/parents to make the choice whether or not to accept the additional burden

  • Having the right information to make a decision

  • Better plan for the future

  • Child as extension of the mother/whānau

  • To avoid suffering

  • Wider impacts on healther matters

  • Neutral choice

JP

John Penny Tue 19 Nov 2019 12:53AM

One of the key intended consequences is to give mothers/parents the option to abort a disabled fetus.

I fully support that option. As the step father of a child with a learning disability, I know just how difficult that is, and how much it takes over your life and your family.

It’s a huge commitment, and I believe that everyone should have the right to decide not to have to do that.

S

Simon Mon 18 Nov 2019 11:23AM

What could be some of the intended and unintended costs & consequences of doing what this approach suggests?

SL

Sylviani Leku Mon 18 Nov 2019 10:25PM

This approach encourages people's freedom of choice regarding their future. Having right information to make a better decision about their personal readiness, especially in reproduction. However, delivering right information (for instance: preparing the agent to deliver adequate information and advise people about the benefits of this approach) will obtain sum of money. Additionally, the government also needs to allocate their budget to provide this test. This condition will happen due to some individuals/parents perhaps could not afford the tests.

In my view, the budget to provide this approach will similar with the budget that the government has to provide welfare for people with disabilities. By allocating money in this approach, the government could help parents and families who will have children with disabilities to prepare better preparation in raising their children in advanced. I will including develop the family as the first education place for children with disabilities. Hence, this approach will not merely end up in immoral consequences.

It perhaps will be a burden for other taxpayers, since the government is using public resources to fund their programs and activities. On the other hand, the money could be allocated directly to help children with disabilities. However, this approach will empowering individuals, parents, families, and communities to support each other due to bad results which may come with the pre-birth testing.

JP

John Penny Tue 19 Nov 2019 12:41AM

For me, the biggest and most concerning unintended consequence of giving mothers and parents complete control over testing and when to fetuses, is that some of them may chose to abort fetuses of the "wrong" gender.

For example, in China, under the one-child policy, and because of the cultural preference for boys over girls, girls were aborted far more frequently than girls, and presumably in situations when there was no other reason to abort apart from gender. According to Wikipedia:

"The long-term disparity has led to a significant gender imbalance or skewing of the sex ratio. . . . China has between 32 million and 36 million more males than would be expected naturally, and this has led to social problems. "Because of a traditional preference for baby boys over girls, the one-child policy is often cited as the cause of China's skewed sex ratio ... Even the government acknowledges the problem and has expressed concern about the tens of millions of young men who won't be able to find brides and may turn to kidnapping women, sex trafficking, other forms of crime or social unrest." https://en.wikipedia.org/wiki/One-child_policy#Disparity_in_sex_ratio_at_birth

Not only does aborting higher numbers of girls risk causing unintended social problems (as highlighted by the quote above from Wikipedia), but it is also something that many people would find morally offensive.

 

JP

John Penny Tue 19 Nov 2019 12:51AM

I agree that better funding for children - and adults - with disabilities will help. It will enable families who do want to keep their child to cope with the financial and emotional difficulties that come with caring for a disabled person.

It also means that other siblings are less likely to miss out. In my family, we have one daughter with Down Syndrome and two who have no disabilities. The lives of the two without disabilities are also impacted - we can't do things with them because the one with Down Syndrome can't. For example, how do you take kids to a movie with one of the kids doesn't understand it, gets bored, and wants to leave? How do you take them on a walk in nature when their sister refuses to get out of the car?

And that's not to mention all the difficulties with acting out at school and having to take extra off work.

My only additional comment is that there should be funding for people with disabilities and their families, not in order to help families with decisions about testing and whether or not to keep a child, but because there should. It's a human right.

By that I mean that everyone should get the assistance they need to be the best they can be. For most of us that's simple - access to free education for example. For others, it means a bit more, ensuring there is wheelchair access to classrooms, or hearing aids, for example. For people with intellectual or learning disabilities, it may mean a full time personal teacher aid. It may mean specialist help learning to talk. But it should be there because it is a human right, not to encourage families not to abort a disabled fetus.

I

Izzy Tue 19 Nov 2019 1:54AM

One thing to note is that, in the choicebook, it stated that the 'my choice, my right' approach does not promote government funding of testing. Instead, this approach promotes people paying for any pre-birth testing themselves. However, I disagree with this- as you noted, government funding is needed for this approach to succeed. This will ensure that all parents will able to choose the tests they desire, truly enabling the 'choice' and 'right' of parents. Also, if no government funding is provided, poor families will be unable to test for what they want/need, which may result in unnecessary suffering, fatalities, and widening socioeconomic gaps.

S

Simon Tue 19 Nov 2019 2:11AM

Welcome @John Penny and @Izzy , good to have you with us. John, your personal experiences and lived experience are hugely valuable for the group and, Izzy, your point about funding is well made.

MA

Margaret Aulda Tue 19 Nov 2019 3:22AM

Giving mothers/parents the rights to choose gives them greater freedom of choice with no limitations and with these choices comes cost. The freedom of choice will mean self-funded testing that is not conditional. However, it may be seen as a financial burden on mothers/parents if they self-fund because they do not meet the conditions for pre-birth testing. Funding for pre-birth testing in NZ depends on the circumstances.  These circumstance seem to be based on the governments’ regulative control on reproductive decision that sets eligibility criteria. Although this provides the government control on expenditure and who benefits, it erodes personal freedom. Increasing accessibility to information and pre-birth testing for mothers/parents may increase government expenditure to expand and increase but it may influence a mothers/parents decision if they have the access to the right information.

LS

Lillian Smith Tue 19 Nov 2019 4:29AM

I think the biggest consequences especially mothers would face is the damage to their reproductive system and well-being. What this approach suggests is giving 100% the power of choice to a mother/couple for pre-birth testing. Given that new diseases are affecting women’s reproductive system, I would recommend that some decisions have to be made by health practitioners and pregnant women's health practices to be standardized by the government.  A woman/parent makes choices depending on the circumstance they’re facing. A mother with financial constraints would decide not to take tests during pregnancy and wait till the baby is born. Or a mother would terminate a pregnancy due to personal reasons. Consequently, a woman who continually makes the decision to undergo abortion will have long term issue with her reproductive systems. This will lead to the woman’s health has been on the line and can have an impact on her work performance either it be  in the office or at home. It does have an effect to the society as well. A citizens well-being is a country’s wealth, and I suggest that the government should make it mandatory for mothers to undergo pre-birth testing and not giving them all the rights. Also, the government should make it free for mothers to take tests.


JR

Jenna Robson Tue 19 Nov 2019 7:09AM

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.

S

Simon Mon 18 Nov 2019 11:25AM

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

JP

John Penny Tue 19 Nov 2019 1:14AM

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.

I

Izzy Tue 19 Nov 2019 2:07AM

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.

JP

John Penny Tue 19 Nov 2019 2:40AM

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.

MA

Margaret Aulda Tue 19 Nov 2019 3:34AM

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.

S

Simon Tue 19 Nov 2019 4:10AM

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!

LS

Lillian Smith Tue 19 Nov 2019 4:31AM

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.


JR

Jenna Robson Tue 19 Nov 2019 8:11AM

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.

SL

Sylviani Leku Mon 18 Nov 2019 10:56PM

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.

S

Simon Mon 18 Nov 2019 11:38PM

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.

JR

Jenna Robson Tue 19 Nov 2019 6:44AM

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 :)

S

Simon Tue 19 Nov 2019 7:55AM

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?

JR

Jenna Robson Tue 19 Nov 2019 8:14AM

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.

DB

Daniel Brunt Tue 19 Nov 2019 7:25AM

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.

S

Simon Wed 20 Nov 2019 8:54AM

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

S

Simon Wed 20 Nov 2019 8:56AM

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