Starting the search for common ground

I think the first action should be in ensuring that every people have access to the right information about pre-birth testing. It means that medical practitioners should be occupied with the information which will consider the cultural, ethical, spiritual aspects, and medical facts. Practically, the actions could be in pregnancy stage, when the women could be advised to check their pregnancy periodically to check whether the pregnancy has bad indication of serious problem. It then could be connected with the quality of medical facilities provided equally for all people. The weakness of this action is the information about pre-birth testing should involve all aspects mentioned before, therefore it is essential to develop information regarding pre-birth testing which gather all values in public. And it will take time to have conclusion or it will occur suspicions, mistrusts, prejudices among people about the tension and purpose of pre-birth testing.

However, if medical practitioners advise pre-birth testing (such as regular check up during pregnancy: USG to measure the circumference of the baby's head and measure the length of the baby) is likely to be common and out of suspicions. But in this practice, how far the result could lead for it is also tend to be ambiguous.

I support this.

See my five interventions below, all of which are interconnected:

Intervention 1: boost funding for pre-birth testing for families at high risk, to improve access and awareness. This could be done through a simple application process, either online or via GP, if people suspect or know there are genetic disorders in their family (no proof required), then they can be funded to visit the nearest facility for the relevant testing.

Intervention 2: subsidise NGOs who offer culture-specific antenatal support services. This should follow principles of co-design, and will hopefully remove incorrect information due to each network reaching critical mass, but also be placed in a unique context that aligns with one’s beliefs.

Intervention 3: equip GPs to incentivise early visits of pregnant women, so they can be fully aware of the services available to them, relating to both testing and antenatal support. This could be through a free nurse visit if you suspect you’re pregnant, and if a positive, then a simple pamphlet summarising the overall ‘journey’, checkpoints along the way, and what services apply when.

Intervention 4: working with the public to develop principles for determining what genetic disorders or disabilities meet the criteria for additional support, either to go through IVF and PGT, pre-birth screening, or family support, post-birth, and then setting up a process to assign new conditions or disabilities as they arise. This will be based on many factors, such as the likelihood to cure, burden on families, healthcare costs, extent of suffering, etc.

Intervention 5: budget for a new capability fully designated to building an evidence base around the impacts on families going through various sorts of testing (or not), so that they can inform effective resource allocation. This will help bridge the gap between international research and optimal system design in a New Zealand context.

My initial thoughts on this are:

1. Pre-birth testing is fully funded and available to everyone in all parts of the country.

2. Extensive public consultation to determine the circumstances in which abortion is available to mothers, and when it isn’t. This should ensure that people with personal experiences have a strong input to the consultation process.

3. Quality support for families to assist them to be excellent parents for children with physical or learning difficulties. This includes both financial assistance as well as services (including medical, education, respite care for families, among others). This is important for a whole range of reasons, but the reason that is most relevant to this discussion is so that mothers/parents don’t feel forced to abort a foetus simply because they don’t have the financial resources to raise a child with physical and/or learning difficulties.

Agree on all the above points.

There were great ideas and points that have been raised so far from the discussions we had in the past days. The issue itself is very sensitive and the decisions associated needs considering other aspects of life as well. There is no win-win situation when making decisions as it deals with life.. 

From the discussions we had so far, I had three points to add onto what Jenna and Sylvian has outlined above. The following are 3 points I would suggest for any proposed actions that needs to be carried out in regards to the issue;

• Mandatory  genetic disorder testing to be conducted in all hospitals.

Testings for any kinds of genetically inherited diseases are to be conducted in all hospitals . This will give a hint on citizens who wish to have babies the possibilities of  deformity a child would posses if the cells associated with it are active. Scientifically, genetic cells that are active gives a person’s physical appearance which those are dormant passed onto the next generation which could have the possibility of being active in a fetus or as the child grows up.  This now leads to my second point on what to do what such things are identified.

• Healthy lifestyle programs 

When a person is identified of the possibilities of having a deformed baby either through genetically or health related issue, healthy lifestyle programs needs to be considered and it this reduces the possibility of have deformities in a child. Health tips and information are to be available to all citizens. This can only be achieved if the government have partnerships with the private sector to roll out programs to minimize the possibilities. This gives me another view to consider in this approach, the PPPP.

• Public-Private Partnership Programs  (PPPP)

In order to successfully implement a program, there has to be a partnership between all government departments and business houses . This will enable the program which includes awareness and campaign of healthy lifestyle to be conducted successfully .As a result I presumably believe that  everyone will be involved in preventing health related deformities and to minimize the genetically inherited diseases. 

From the above points, they are all related when considering an intervention program to be rolled out. These are just my suggestions and is opened for modifications.

Thanks @lilliansmith, I definitely see some the benefits in making genetic testing mandatory. Do you mean when babies are born? I suppose we would need to first find out the proportion of late discoveries versus early ones due to known risks or obvious traits, to ensure this has the potential to be cost-effective.

Hi @Jenna Robson , In my view here, It will be beneficial if mothers do a test before planning to have a child. In any means, if the genetic disordered cells are identified during tests, then the mother will know the possibilities of having a child that is deformed. It gives options to a women in deciding whether to have a child or not as the cells may become active or dormant in the fetus.

My three proposals after reading through the other threads;

Free and collective views – decision about pre-birth testing should be representative of all New Zealanders that includes Maori and other ethnicities who call NZ home and religious groups. The views must be free from any form of intimidation and political influences and should be reflective of an individual’s view.  It should be built around the principle that no view or idea is wrong therefore every view is important.

Information and decision driven by data– information made available to the public should be supported by data. Data on psychological and financial impacts or benefits. Mothers/parents should be well informed with information that is supported by data to support their decision. Data to guide government for budgetary planning   and future planning and implementation of pre-birth testing programs.

Accessibility to information – everyone should have access to information to make informed decisions. Information should be made available through the internet but also in health centers, antenatal clinics, support groups, etc... as well. They should have access to information that easily accessible and in a format that can be easily understood.

You have raised good points. I strongly agree on the those points. However, I wonder if accessibility to information should be more strategically targeting women. So we can identify and focus more on the most effective channels to disseminate information to women. What do you think?