Nobody's Child, Everybody's Children:

Assisted Reproductive Technologies Meet the Public

The development of processes related to assisted reproduction has led to new perceptions of what it means to be human and what is natural or normal. Public ethical concerns have arisen alongside the creation of the first IVF baby through to the use of pre-implantation genetic diagnosis for the creation of “saviour siblings” to provide HLA matched biological material to save sick siblings.

In the twenty-first century many people distrust science, even though they recognise the potential health benefits from biotechnology. The societal adoption of technology involves a multifaceted process of cultural appropriation. At times the “public” is seen as being negative and ill-informed, while “experts” are seen as being positive and well informed.

Societies take a variety of approaches to address such concerns. In New Zealand, the government established Toi te Taiao, the Bioethics Council (“the Council”), in 2002 as a ministerial advisory committee. The Council’s Terms of Reference are based on recommendations made by the Royal Commission on Genetic Modification in 2001. The key responsibilities of the Council are to

• Provide independent advice to Government on biotechnological issues involving significant ethical, spiritual, and cultural dimensions
• Promote and participate in public dialogue on ethical, spiritual, and cultural aspects of biotechnology and enable public participation in the Council’s activities and
• Provide information on the cultural, ethical, and spiritual aspects of biotechnology.

Cultural concerns are much wider than the general policy discourses, dealing as they do with economic costs and benefits and short-term health and environmental risks. This paper argues that, ideally, public engagement extends beyond consultation to a multi-faceted approach involving education and dialogue.

Often the “public” is viewed as one global entity with uninformed and inflexible opinions about such technologies. Consequently, it is believed that this “problem” can be solved with more information, rather than appreciating the varied and complex nature of public concerns. In this context, the standard process of policy-making has been the preparation of an information document and invitation of the public to make submissions pertaining to that document. In contrast, dialogue involves an interactive process of engagement, making it possible to explore a topic often viewed as polarised.

The paper will consider pre-implantation genetic diagnosis and, in particular, its use to produce a “saviour sibling”. It will consider the processes by which policy and regulation have been developed in New Zealand. It will argue that the values and concerns of the public must be taken into account appropriately in the process of public policy-making to ensure the acceptance and trust of the public.