Executive summary

During pregnancy, a woman and/or her unborn baby may undergo tests for various reasons. The term ‘pre-birth testing’ applies both to relatively common antenatal procedures, such as ultrasound examinations, and also to more specialised tests, such as those used to detect rare genetic conditions or illnesses. Another kind of pre-birth testing is preimplantation genetic diagnosis (PGD), where cells from embryos created outside a woman’s body through in vitro fertilisation (IVF) are tested for certain conditions and illnesses.

Some forms of pre-birth testing are already commonly used in New Zealand. Certain emerging forms of pre-birth testing, particularly those involving PGD, are not yet permitted here. Others are permitted only with oversight by the government-appointed Ethics Committee on Assisted Reproductive Technology (ECART). New guidelines covering the use of PGD are currently being developed.

Meanwhile, the range of conditions and illnesses that can be tested for is expanding all the time. Overseas, the uses of PGD (potential and actual) are broadening as knowledge of genetics develops.

In light of these developments, important questions arise. How far might we go with pre-birth testing? What might the consequences be? Who decides whether to test a foetus, and in what circumstances? Who decides what to do once test results are known, and what choices are acceptable?

These questions are not only for the medical and scientific communities: they have significant cultural, ethical and spiritual dimensions that concern us all. During 2007 and early 2008, Toi te Taiao: the Bioethics Council talked with New Zealanders to find out what they thought about pre-birth testing. What we heard, together with the results of the Council’s own research and deliberations, are presented in this report. It has two major components:

What the Bioethics Council heard (Sections 3 and 4)

These sections reflect the views of New Zealanders about pre-birth testing — its benefits, disadvantages, costs and consequences — and the administrative and legislative framework governing its use. The particular responses of Māori, and the world view which commonly underpins those responses, are reflected in E kore au e ngaro he kākano i ruia mai i rangiātea: Māori deliberations on pre-birth testing (Section 4).

The Bioethics Council’s thinking (Section 5)

In this section, we reflect on what we heard and make recommendations to Government in key areas including:

• the challenges of decision-making about pre-birth testing
• the need for equitable access to testing for all New Zealanders
• the need for high-quality, appropriate and diverse information about pre-birth testing for parents and the wider community
• the need for people with disabling conditions (including those detected through pre-birth testing), and their families, to be supported
• the need for an administrative and legislative framework that can respond to new and challenging developments in PGD in ways that balance individual freedoms with wider cultural, ethical, spiritual and social concerns.

This report is the result of an innovative public deliberation process, outlined in Section 2. This was the first time Toi te Taiao: the Bioethics Council had used deliberation (rather than dialogue) to engage the public, and we found it extremely positive and productive. People came together face-to-face or online to identify the issues raised by pre-birth testing, to reflect deeply, to explore their own and others’ thinking, and to develop common ground that could form the basis of future policy.

The rich, dynamic and thoughtful nature of these exchanges is reflected here in the many quotes and personal stories. We thank all those who participated, and whose views and experiences have helped shape this report.

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