So what’s the issue, what can be done, and what are the arguments against each approach?

Pre-birth testing has become a routine part of a woman’s pregnancy, while the use of PGD (although much less common) is increasing. Depending on where developments lead to, PGD could, in the future, be as much in demand and as routine as scans, blood tests and amniocentesis are today.

To help citizens consider the issues concerning pre-birth testing, this choicebook considers the issues from four different perspectives, and suggests approaches by which the issues might be resolved.

Each approach offers a different diagnosis of what’s important. Each provides a direction for public action. This section of the choicebook places the approaches side by side to help you compare and consider them.

Approach one: ‘My Choice My Right’

Mothers / parents should be able to make their own decisions about reproduction. We will all benefit if individuals are left to make up their own minds about very personal and private issues such as pre-birth testing. Mothers / parents are in the best position to know what their best interests are and what is best for their child. If we allow the government to regulate reproductive decisions, this will lead to erosion of our personal freedoms and will allow the government to increase its control over individuals.

What can be done?

• remove all restrictions on PGD, pre-birth testing and abortion.

In opposition:

• parents’ reproductive autonomy should be limited
• every embryo and foetus has a right to life
• decisions about pre-birth testing / screening do not only affect the mother / parents. Many individual choices can have a cumulative effect on society
• if the condition is not serious or would not develop until after childhood, the right to use PGD or to terminate pregnancy should be restricted
• people should not be able to select against embryos or terminate pregnancies if the condition is likely to be able to be successfully treated
• individuals don’t always have the wisdom to make good decisions
• this approach would not be fair or equitable.

Approach two: ‘Life Is a Gift’

People shouldn’t have the right to discard embryos or abort foetuses on the basis of pre-birth tests. Instead, we should focus on ways to make sure all children have the best chance to reach their potential. Doing this would mean paying serious attention to our most important values: love, respect for all human life and care of our most vulnerable people. Trying to control our babies’ characteristics interferes with what is natural and could have unintended and unwanted consequences.

What can be done?

• allow testing that benefits the mother or helps parents prepare for a child, as long as embryos are not discarded and foetuses are not aborted
• require that every IVF embryo be transferred into a women’s uterus at some stage with the intention that it will implant and develop into a baby
• review the capacity of the support services for people with illnesses, diseases and physical disorders
• provide adequate government support and funding to family members who choose to care for disabled relatives
• provide adequate levels of government-funded respite care to family members who choose to care for disabled relatives
• provide the infrastructure so that disabled people can participate fully in our society
• provide opportunities for people to develop the ability to make moral judgements about complex issues.

In opposition:

• why wouldn’t we try to prevent children being born if they are going to suffer or die young?
• caring for disabled children can be stressful for parents and has caused relationships to break up
• if more severely disabled people are born, more care will be needed
• we can’t ignore the financial cost of caring for more disabled people
• pre-birth testing is routinely available overseas: why shouldn’t New Zealand parents be able to make the same choices?

• more restrictive grounds for abortion may increase the number of ‘back-street’ abortions.

Approach three: ‘Tangata Whenua’

It is crucial that when it comes to pre-birth testing, the needs of Māori are met and Māori values are taken into account. This means that the government must work with Māori to ensure that the Treaty of Waitangi principles of partnership, protection and participation are applied to pre-birth testing. Māori must have access to adequate resources to inform and empower them, so they can develop tikanga and matauranga about infertility and pre-birth testing.

What can be done?

• involve iwi, hapū and Māori organisations when developing policy and setting priorities with respect to pre-birth testing
• produce relevant, appropriate information about pre-birth testing, genetic counselling and care during pregnancy
• provide fully funded pre-birth testing which is available to all women / whānau who choose to have testing
• provide adequate support for Māori women / whānau whatever choices they make in response to the results from pre-birth testing. This includes adequate support for families with disabled children
• ensure that tissue and blood is not retained or used for research without specific informed consent
• iwi, hapū and individuals must be made fully aware of the purpose of research and its potential harms and benefits.
• ethics committees must ensure this before approving research proposals for research using Māori genetic materials.

In opposition:

• Māori may benefit from more than a fair share of the limited resources available
• who speaks for the unborn child or foetus?
• the money used for new technologies, such as PGD, may be diverted from more common healthcare needs which particularly affect Māori, such as treatment of diabetes.

Approach four: ‘Who Should Have a Say?’

For most mothers / parents pre-birth testing is just a routine part of pregnancy. However, the reason for screening and testing is to find out whether there are any abnormalities in the foetus or embryo. If there are, parents might suffer anxiety and will need to make informed decisions about what to do. In other words, pre-birth testing always has potential implications. This being the case, the government needs to provide people with clear and relevant information about pre-birth testing. The information needs to reflect not only ‘facts’ but also the kinds of cultural, ethical and spiritual issues which might help people come to terms with such potentially difficult decisions. It is equally important to make sure that a wide range of people have input into any information so that it reflects their experiences, needs and knowledge.

What can be done?

• provide consistent information about pre-birth testing, which must be made available throughout the country
• information about pre-birth testing needs to include cultural, ethical and spiritual aspects as well as medical facts
• families and the public need to be involved in the development of information about pre-birth testing
• provide suitably trained people who are able to answer any questions and concerns about pre-birth testing
• ensure communities are involved early on in policy and decision making about future developments.

In opposition:

• plenty of information on pre-birth testing is already available
• people can find all the information they need for themselves, so there is no need to use resources which could be better spent in other parts of the health system where the needs are greater
• there aren’t enough interested people available who would be willing to get involved in developing the information
• anyway, who would decide which members of the public would be involved?
• more information would not necessarily make it easier to make decisions
• if pre-birth testing is more widely discussed, this could lead to conflict within some cultural and ethnic groups.

 

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