Loomio

Starting the search for common ground

S Simon Public Seen by 141

I want to try and give you a sense of how a group might start its search for common ground, even though we have not fully prepared ourselves for this process - no one has explored all the approaches but please review the choicebook and discussions in the other threads to try and get a sense of the issues and what's at stake for supporters of all the approaches.

Once you have reviewed all the approaches, the next step is to think about and identify 3-5 policy proposals/actions that you think most people could live with. These might come from one approach but will more likely be a combination of actions drawn from all the approaches. It's also possible that you might think of a policy action that is not associated with any of the approaches. (I wouldn't normally limit it to a max of 5 actions but I don't want you to do too much work).

Once you have identified your actions, post them to this thread. Late tomorrow, I will collate all your proposed actions.

We'll likely see that a lot of you will proposal some similar actions and that there will also be a few actions that have been proposed by only one or a few people. While this gives us a sense of how much support there is for proposals, it would not be the final word. The collated list would form the agenda for the next set of discussions aimed at being able to put forward the group's advice - but we're not going to attempt this in this simulation.

This is the one task that I want you to do as individuals and I don't want you to do any more work that just post your actions. There's no need to enter into any further discussion in your group as you've done enough work.

Finally, here's a facilitator's rule of thumb for knowing when people are ready to search for common ground. A group is ready when everyone can make a good case for the approach they support least and also point out the problems and weaknesses of the approach they most favour.

SL

Sylviani Leku Thu 21 Nov 2019 1:41PM

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.

JP

John Penny Thu 21 Nov 2019 10:47PM

I support this.

JR

Jenna Robson Thu 21 Nov 2019 7:53PM

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.

JP

John Penny Thu 21 Nov 2019 10:58PM

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.

LS

Lillian Smith Fri 22 Nov 2019 12:30AM

Agree on all the above points.

LS

Lillian Smith Fri 22 Nov 2019 12:17AM

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.


JR

Jenna Robson Fri 22 Nov 2019 1:22AM

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.

LS

Lillian Smith Fri 22 Nov 2019 1:53AM

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.

MA

Margaret Aulda Fri 22 Nov 2019 5:20AM

My three proposals after reading through the other threads;

Free and collective viewsdecision 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 datainformation 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.

PS

Pi Say Fri 22 Nov 2019 7:11AM

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?

I

Izzy Fri 22 Nov 2019 7:50AM

Great points from everyone! My three policy proposals are:

1) Drawing on a point made by @Jenna Robson, that funding should be prioritised for families who are either genetically or environmentally at risk of their child having severe developmental issues, or at risk of their child having some developmental issues that will be very costly to them (meaning that low-SES families will have higher priority). This will ensure that the families who will be the most strongly affected by the outcomes of pre-birth testing have access to it, giving them time to prepare for the future.

2) Drawing on points made about information access as well as @Margaret Aulda's second point about data-driven decision-making, that a public database should be developed to better aid families in identifying individual risks, and aid them in making decisions about a child's future (however, not intended to replace medical advice!). This database could cover all potential birth abnormalities and developmental differences, and would include information on long-term child outcomes to support families and allow them to plan in both the long-term and short-term (this, as well as supporting approaches 1 and 4, would hopefully enable more people to take Approach 2 because they would better be able to plan for their child's future). This database should also be updated frequently, allowing parents who may carry recently identified genetic diseases and the like to make fully informed decisions.

3) Alongside this mass of information for parents to draw on if they want, and support from medical professionals, there should also be plenty of family support available at the community level. This would mean forging stronger connections between community groups, including iwi and whanau, families, and health professionals. This would mean doing a number of things, including funding community groups that support new families and pregnant women like Plunket, and ensuring that health services and testing are well-tailored to communities (e.g. risks and considerations able to be explained in multiple languages including Te Reo, operating clinics in community locations, etc).

PS

Pi Say Fri 22 Nov 2019 9:17AM

First of all, before designing policy options, I would suggest that understand people’s different perspectives/their concerns about pre-birth testing which I agree with @John Penny. Therefore it is important for the government to answer with those concerns and explain the importance of this program. So it can creates the mutual understanding between the government and citizens on pre-birth testing. To achieve this mutual understanding, I agree with other members' ideas @Margaret Aulda @Izzy @John Penny that evidence-based interventions, data, and consultations are being used to support decision making and design program.

However, some proposed policy options can be

a. Online: the government should make relevant information available online. so people can have access about program. Furthermore, if it is possible, people can also check their health/family history to see the possibility of having unhealthy-child.

b. Hospital-based services: this is just like the other members' inputs about pre-birth testing in the early stage of pregnancy which services are provided in hospitals.

c. Community field visit: this program aims to make services more accessible and convenient. GPs organize the pre-birth testing in the communities on the weekend which women have time to test their embryos, and results of the tests can provide through emails.


This is just an ideal option if the technology is advanced enough for women to test embryos by themselves (home-care approach). This option might be involved with IA or technology to do self-check on their embryos. However, I did search online but it seems not available for pre-birth test.

S

Simon Fri 22 Nov 2019 10:08AM

This is a super thread. It's really great to see you building off each others work.

I was planning to collate your proposals today but my time has been taken up dealing with some family issues. So please accept my apologies - I'll get onto it tomorrow.

DB

Daniel Brunt Sat 23 Nov 2019 6:35AM

Some really interesting points and already a lot of common ideas and thoughts. Sorry for the delay but I have been travelling. My policy options:

(1) Pre-birth testing for all that request it. No questions asked. Needs to be available to all and will more than likely need to be centrally funded. Could be offered through current midwifery services as an option.

(2) Evidence based education and public consultation on the circumstances in which abortion is acceptable. This would be very contentious and would need ongoing periodic consultation (5 yearly?) to test that the policy reflects the contemporary public thinking. Policy needs to be flexible enough to change with public perceptions.

(3) Mandatory testing for all pregnancies. Sounds a bit big brotherish but this information would be strictly for future funding decisions around anticipated stressors on the health system to ensure that adequate medical, mental and financial support is there for families who incur extra costs with special needs children. Information to be made available to parents if requested.