'Who Gets born?': Pre-birth testing, Public Deliberation and the Bioethics Council

"There is an international trend to greater public participation in government decision making, resulting in a movement toward 'public consultation' or 'public engagement'. These require two-way communication, transparency of the decision making process and meaningful incorporation of public input into that process. However, in practice, much consultation involves tightly-scripted opportunities for public comment on well-developed policies, with no public deliberation or institutionalised mechanisms for reflecting the public's input in policy construction. That said, there is a continuum - ranging from just providing information through to empowering the public. Each process may be appropriate - depending on the purpose of the engagement.

The question remains: how do we translate the diversity of public values and opinions into a policy position that most people are able to accept? The New Zealand Bioethics Council's latest project may provide some answers.

Toi te Taiao: the Bioethics Council was established by the New Zealand government in 2002 to consider the cultural, ethical and spiritual dimensions of biotechnology. It develops independent advice to the government by promoting and participating in public dialogue.

In June 2008 the Council released its report on its 'Who gets born? Pre-birth Testing' project which includes sections on the 'deliberative' process used, its effectiveness, a summary of what the Council heard from around 700 members of the public, a section on the Council's thinking and its advice to government.

Deliberation can be distinguished from other forms of public engagement in its emphasis on individuals being willing to examine approaches to an issue in terms of a common best interest. This process assumes that no individual holds the best answer to a public problem and that a structured consideration of the benefits, costs and consequences of different ways of acting will lead to the most sustainable solutions.

In the first stage, 56 members of the public took part in six one-day 'framing' workshops. The purpose was not to 'solve' pre-birth testing but to create a framework for the public to work through distinctly different ways of understanding pre-birth testing. Participants shared their perspectives and experiences. They then developed distinct approaches that reflected the underlying values and principles expressed by the group. They began to identify the benefits, drawbacks, actions for implementation and (unintended) consequences for each approach. This work was incorporated in a publication called 'Who gets born? Pre-birth testing choice book'.

The second stage was public deliberation. Groups explored the benefits, costs and consequences of the approaches and searched for common ground from which to develop collective recommendations. 256 people attended one of the eighteen events around the country. People could also take part in the public deliberation on-line, using a custom-built website.

It is not possible to fully reflect the richness of the input from the participants, but a snapshot of some of the more common themes includes:

• the value of human life;
  
• varied views as the point at which life begins, from the point of fertilisation, to once the embryo was implanted in the mother's womb through to belief that the moral significance of the fetus increases as pregnancy progresses;
  
• women's rights to reproductive autonomy;
  
• the importance of parental decision making;
  
• the value of having people with differences and disabilities in society;
  
• the need for disabled people and their caregivers to be socially and financially supported;
  
• concern that some health professionals viewed termination of a problematic pregnancy as the 'default option';
  
• some unease about sex selection for social reasons, although the reasons for this were unclear, as it was accepted that in New Zealand there is no particular preference children of either sex;
  
• concern about creating 'saviour siblings' - generally because of concerns about the future welfare of the tissue matched baby, rather than whether the condition suffered by the sick child was heritable.

There were areas where the participants were able to agree- particularly the need for better information for parents, as the possible consequences of tests were not always fully understood and some people had unrealistic expectations of testing - so they needed information that explained its limitations and risks.

Some people are concerned that new technologies could change views about what is 'normal': we could become a society in which 'eugenics', 'designer babies' and sex selection were commonplace. Also that pre-birth testing could effectively create two social groups - the genetic 'haves' and the 'have-nots.'

The primary conclusion was support for undirected parental choice, which requires that parents be sufficiently informed in a non-directive manner to be able to make fully informed decisions and that parents should be supported- whatever their decision might be.