Exploring Approach 1: My choice, my right

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

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.

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

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.

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.

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.

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.

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.

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.

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.