The ONE thing Government should – or shouldn’t – do with respect to pre-birth testing

The rule of impartial Law not Ideology or Dogma

As the consequences of the choices made by people (parents) rest with them and only partly with society, the government should produce rules/regulations/laws which are as neutral as possible. I don't want to see laws etc produced by people with preconceived ideas, ie that the human being is a machine or is a gift of God, irrespective if I personally agree with one or the other (which I don't). As we are part and parcel of society we should pay for the financial consequences of choices made in this area. It is the obligation of society to carry the financial burden of the choices of its (mature) citizens, just as we pay for prisons, the army and burocracy.

The choices we make here are political in nature and thus depend on our world view.

I don't want others being able to dictate or presure me to something I don't want to do and see no reason for doing, like has happened to friends on the issue of vaccination.

I think this is a great way, which may need further improvements, to involve citizens in political debate.

My Daughter's Right to Choose in the future

The one thing the Government should do in the future is to give first priority to allowing pregnant women to access pre-birth testing where they have a reasonable risk of passing on a genetic illness or disability to their child. (I appreciate that "reasonable" will need to be defined, but by this I mean a real risk, not a frivolous unlikely possibility).

I have a daughter with a congenital bowel disorder. She has endured significant surgery, a colostomy, medications and pain in the early years of her life, although at 11 years old she is currently well. Genetic testing indicates she has an approximately 50% chance of passing on the condition to any child she may have in the future, and the child may have a more severe case of her condition.

Without pre-birth testing (and providing it is available in future for her condition), my daughter may well elect not to have children. She may not want to make any child endure what she has been through. She may not want to devote a portion of her life to nursing a possibly sick child through the early years of life. She has witnessed her parents' marriage disintegrate, in part through the strain of caring for a sick child, and she may not want to replicate this in any future relationship she may have.

With pre-birth testing, she would have the right if she choose, to bear a child free from this condition, and to possibly terminate a pregnancy if that child had the bowel disorder. I believe this a fair and reasonable right. Why would you not want to elect to have a child that can exist free from pain, from an embarrassing bowel condition? Having nursed my own daughter through her early difficult years, I would have given a great deal to have spared her the distress and pain she endured. And to be honest to have spared myself and my partner and our families from the sadness and exhaustion of going through this experience.

Couples who undergo IVF often only have a small proportion of the embryos that are harvested implanted. Why should the same right not apply to a woman with a genuine reason for wanting to choose?

I don't support designer babies...but I do support the right to use the knowledge and the advances we as humans have achieved to spare innocent children and their families from unnecessary illness, disability and pain.

Change the policies regarding IVF/PGD

The rules need to be changed regarding IVF/PGD.

One of the most basic failings of the current policies surrounding PGD is the limitation on how long embryos can be grown before implantation. Current legislative restrictions mean that an embryo cannot be grown to more than 8 cells prior to implantation. Genetic testing requires the removal of two cells from that embryo. At the 8-cell stage, doctors cannot tell what cells they are removing - the cells could be stem cells, developing placenta, or developing baby. The process of testing could destroy the very thing the doctors seek to create. By growing the embryo to 128 days, doctors can differentiate between the cells, ensuring that the cells removed for testing are stem cells or developing placenta - and not part of the developing baby.

Another very basic failing of the current policies around IVF/PGD is the fact that PGD is not currently funded under the public health system. There are hundreds of couples with known genetic conditions that are either a) lethal in childhood or b) detrimental to the quality of life. In these instances, couples should have the option of going through publicly funded IVF/PGD.

If you have never been in the position of having to contemplate terminating a very wanted pregnancy because you know the child you carry is going to die from an inherited genetic condition, you can't possibly understand the horror these couples face.

Screening

It is very important to realize that as soon as something is subsidised by the government people are drawn into participation frequently without considering what they will do with certain information. I think the government should not subsidise screening that develops a risk estimate as this is often unreliable and causes undue worry for some and unrealistic expectations for others.

Who is the Creator?

I am concerned that the more scientists discover the more they will want to experiment with their knowledge. At what price? Millenia of evolution have lead us to where we are today. The selection of only "favourable" characteristics may have devastating results as far as the gene pool is concerned. Has anyone considered that some so called undesirable genes may be linked with genes necessary for the survival of the species? By making choice available we are putting parents into a position of having to make that choice. Leave breeding to nature. The human race has got this far and is very successful at surviving. The more we save those who would have died naturally the more we weaken the gene pool too. And IVF is a great leap into allowing reproduction where nature never intended it, with consequential high cost both emotionally nad finncially. Just because we can do something doesn't mean we should do it. Government do NOT support pre natal testing or IVF programmes. Basic pre natal testing with the focus on keeping the woman and fetus safe is good, however to carrry testing into a field of selection for culling is dangerous and unethical.

Access to pre birth testing for genetic disorders must be allowed

Having seen the heartache caused by a previously unknown genetic disorder appearing in a friend's first child (who subsequently died of it), and then the difficulties they had accessing tests to make sure it didn't happen to them again, it is imperative that parents be allowed to have these sort of tests. I have a slight personal worry that over time more & more genetic tests may be developed & we'll end up like the movie 'Gattaca'! Perhaps my problematic genes (my daughter and I both have autoimmune problems related to genes) might cause embryos to be rejected in the future - which is a depressing thought because we both lead relatively normal (although complicated) lives.

good survey design

The one thing the Government *shouldn't* do is encourage badly written surveys like the choice book - many of the questions were badly phrased, e.g. asking if one agreed with a particular course of action (which one may) but also giving a reason (which may not be the reason one agrees). Thus either one has to agree, implying erroneously that one accepts the reason, or disagree because one's reasons are different, implying that one does not agree with the course of action.

The Government should illegalise abortion

God has the right to decide who is to be born. So many people (over 17,000 per year) are aborted in this country. Abortion should become illegal. Man does not have a right to choose -

govt shouldn't be putting out biased (towards termination) deliberation process cont

saying "Stop testing for Down syndrome now"; stories from mothers like me explaining the good things (our life being enriched by our son; how funny, intuitive and loving he is; how much pleasure we get from his achievements; the strengthening of our marriage; the loving accepting siblings he has...) and the bad (the difficulties with agencies, the schools that are hopeless, the desire for people to bring in routine screening and terminate these lovely people). But no, there is nothing about this in the whole booklet. It is in fact written in such a way that you feel comfortably removed from the real issue-the fact that it is diasbled people, who do in fact want to be born that we are discussing from such a distance. And what's with not advertising the fact clearly (at the meetings) that "toi te taio" is not independent from the govt? That the members are elected by the govt? That they will hover around your discussion groups and butt in if you're getting too controversial or are presenting arguments that may sway the public attending the meetings away from their intention to bring in wholesale screening (particularly for DS it seems-the only "disability" that keeps getting referred to. So painful to hear that all the time. There is nothing wrong with having Down syndrome). Why is there no inclusion in the booklet (or on-line) re the fall-out of testing collectively (i.e. there will be 90% less people in our socities with pre-natally detectable conditions. Believe me, a world without people with Down Syndrome would be a true shame; a true loss). This deliberation is skewed towards lulling us into beleiving that the govt is being responsible, but it is a cover-up. It will be institutued and NZ will be worse off for it.

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