Pre-birth testing is a tough quandary

How far should we go with pre-birth testing? Who has the right to decide? What might be the consequences of developing more tests?

These types of questions were tackled by participants in the Toi Te Taiao: Bioethics Council’s online deliberation carried out last year and reported in, “Who gets born?: Pre-Birth Testing”.

The Bioethics Council used a deliberative process for engaging the public on the subject of pre-birth testing that included face-to-face meetings and online discussion.

Most mothers have pre-birth tests such as blood tests and ultrasound. But chair of the Bioethics Council, Martin Wilkinson, explains that because the range of things we can test for is expanding, the council felt it was timely to engage on the question of pre-birth testing and also pre-implantation genetic diagnosis.

“Pre-birth testing has allowed many families to avoid having children who would suffer from painful, disabling or fatal conditions. For others, it has given them time to adjust to the knowledge that their baby may be born with a disability or medical condition,” Wilkinson said.

Similarly, but more advanced, is the testing of embryos created outside of the mother’s body. Pre-implantation genetic diagnosis (PGD) involves testing one or two cells from these embryos, with the aim of identifying certain medical conditions. An embryo without those conditions is selected and transferred to the mother, while affected embryos are discarded.

“The desire to have a healthy baby is universal among expectant parents. But views are mixed on the extent to which pre-birth testing helps — and should be allowed to help achieve this outcome,” Wilkinson said.

The Bioethics Council Secretariat, helped the council pioneer the deliberative method which included components like the online ‘choicebook’, that are new in this country.

The deliberative dialogue project first brought members of the public together to frame the issues. It then involved 18 deliberative events around the country including five hui and two fono. People were asked to move beyond individual views and work towards finding a common direction by weighing up costs and consequences of their choices.

John Pennington, who manages this work for the council explains that policy-makers sometimes assume that, by arming the public with scientific facts, people will understand new technologies. However, he says, the mere availability of information does not in itself generate understanding, let alone acceptance.

“Deliberation promotes civic involvement and responsibility. It can increase trust between the public and ultimate decision-makers. It can produce a unique form of non-expert or ‘socially constructed’ knowledge.”

“So rather than judging points-of-view, participants were asked to group the points-of-view into distinct approaches to pre-birth testing according to the underlying values and principles and then to consider them,” Pennington explained.

The Ministry for the Environment provides secretariat services to the Bioethics Council.

To read the report and bioethics recommendations visit: www.bioethics.org.nz

For more information on deliberation as a method of consultation contact John.Pennington@mfe.govt.nz or phone (04) 439 7673.

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