Case study: Who gets born? pre-birth testing project

This project was run in a collaborative manner.

The Council provided processes that enabled the public to frame the issues, develop alternatives and identify their preferred solutions to the maximum extent possible. In its advice to Government, the Council reported what it had heard from the public and presented its own reasoning and recommendations. The Government is ultimately responsible for deciding government policy and has committed to responding to the Council's report.

Toi te Taiao: the Bioethics Council (the Council) was established in December 2002 in response to a recommendation of the Royal Commission on Genetic Modification (2001). It was disestablished on 11 March 2009, but this case study is still relevant,

The Council’s Terms of Reference directed it to:

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

The Council’s terms of reference emphasises dialogue. Over time, the Council has become increasingly aware of the connections between public dialogue and participatory forms of public involvement in decision-making. Internationally, there has been mounting interest in, and experimenting with new forms of governance, which recognise the fundamental right of all citizens to have a say in decisions that affect their lives by engaging in policy development and decision-making activities.

A number of global institutions (such as the United Nations, the World Bank and the OECD), are supporting and encouraging efforts that go beyond consultation and one-way forms of communication and move towards modes of public involvement that give legitimacy to citizens taking active roles in agenda-setting and issue-framing.

According to the literature, deliberation enables members of the public to:

• come to a better shared understanding of underlying issues
• make substantively better policy recommendations
• improve relationships between stakeholder groups
• experience “empowerment”.

The Council’s first two major public dialogue projects were on human genes in other organisms and animal-to-human transplants (xenotransplantation). These projects developed conversations between people with different beliefs and perspectives, in order to build mutual understanding. During the process, participants typically experienced a softening of stereotypes and developed more trusting relationships.

In 2007, the Council started work on the cultural, ethical and spiritual aspects of pre-birth testing. The policy objectives were to:

• increase the public’s general awareness of issues related to pre-birth testing, primarily through the media and Council communications initiatives
• raise awareness and understanding among participants of pre-birth testing issues and of possible policy approaches to this question
• obtain informed and usable input that would help shape the Council’s recommendations to Government on pre-birth testing and assisted reproduction.

The Council also sought to:

• develop the Council’s internal capacity and skills in the areas of public deliberation, both online and in-person
• demonstrate the value of deliberative approaches, both within the Council and by third parties (e.g., Government, policy and decision makers, the general public, the media)
• establish a foundation for ongoing dialogue between and amongst the Council and interested individuals on the issue of pre-birth testing and other bioethics issues.

The Council decided to use a ‘deliberative dialogue’ process developed in America by the National Issues Forums network. This extended the role of participants to include framing the issues and taking responsibility for assessing the advantages, disadvantages and consequences of particular policies. In total, approximately 700 people took part.

Fifty-six participants - each of whom had interviewed at least five other people beforehand - attended ‘framing days’. Six days were held around the country during July and August 2007, including a hui for Māori and a Pacific fono. The goal of the issue-framing was to bring ordinary members of the public together, to create a document that expressed the basic concerns behind the problem.

Four distinct approaches emerged from the participants’ discussions; approaches that reflected different and competing ways of dealing with pre-birth testing.  (The approaches were ‘my choice my right’, ‘life is a gift’, ‘tangata whenua’ and ‘it’s about information, knowledge and the public's involvement’.)

The issues associated with all four were presented in a document known as a Choicebook.  It also contained background information on the scientific, ethical and social aspects of pre-birth testing, targeted at the general public. 

During November and December 2007, 18 face-to-face deliberative events were held, including four hui and a Pacific fono. In total, 256 people attended. More than 80 percent were women. Many were parents or grandparents, including those of children with disabling conditions, while others had particular concerns about child disability. Many had strong pro-life views, usually associated with Christian beliefs, and some were affiliated to pro-life groups.

Participants at six of the events were recruited by community groups such as kindergartens, kohunga reo and a women’s refuge. These groups organised events for the Council and were asked to recruit a diverse cross-section of their communities.

Each event lasted three hours and was guided by an independent facilitator. Council members also attended. Participants worked their way through the Choicebook, discussing the advantages, disadvantages and consequences of each approach. They were encouraged to examine positions different from their own views, and to identify any common ground for policy recommendations. Sometimes groups found it easy to make explicit recommendations; at other times, this was more difficult and discussion focused mainly on people’s responses to issues posed by the different approaches to pre-birth testing.

Some groups did not finish working through all the approaches. This was the case with the Pacific fono, where both the process and the subject matter were unfamiliar to some participants. Consequently, this event was devoted more to raising awareness than to policy development, and would perhaps have worked best as an initial (and very valuable) stage in a two-stage process.

From November 2007 to February 2008, people could also take part in online deliberation. This enabled a broader mix of people to participate, contribute and develop recommendations for future policies. The online interactions were designed to closely mirror the face-to-face events. The Council recruited a large proportion of participants through a two-week advertising campaign on the Trade Me website.

Before they deliberated online, people were asked to complete an online version of the Choicebook; 406 began doing this and 281 completed all the questions.

Participants also contributed more than 60 personal stories and ideas about pre-birth testing, while 58 people took part in three online deliberation groups - moderated online conversations that aimed to further explore the issues and approaches presented in the Choicebook in a similar way to the face-to-face deliberative events. The online deliberation was hosted by Ascentum’s dialoguecircles.com platform, an internet-based toolkit that has been custom-built for online deliberation.

The deliberative process used for the pre-birth testing project was independently evaluated using participatory methods. The evaluation was based on the nine criteria developed by Rowe, Marsh and Frewer (in ‘Evaluation of a deliberative conference’, Science, Technology and Human Values, Vol 29, 1 - 2004) that they argue should be satisfied for a deliberative exercise to be considered a success. 

The criteria are:

• representativeness
• independence
• early involvement
• influence
• transparency
• resource accessibility
• task definition
• structured decision-making
• cost effectiveness.

• While few participants changed their thinking about pre-birth testing, they did acknowledge some shifts in outlook — more compassion for people facing difficult decisions associated with pre-birth testing, more openness to the views of others (although this did not necessarily mean willingness to change their own), and a greater interest in public dialogue in general.
• Participants rated the planning and principles underpinning the deliberative events highly, and were very positive about representation at the events, their lack of bias, clear purpose and resourcing. They said the events provided the chance for open and free discussion, and allowed them to meet interesting and diverse people. However, some expressed frustrations about time constraints, the structure or facilitation of events, and a lack of diversity in some groups.
• Despite the ‘newness’ of deliberation as a public participation tool, participants were clearly enthusiastic to be involved. As well as being keenly interested in the topic of pre-birth testing, they had also become interested in the deliberative process itself. Some compared it favourably with other public consultation processes they had been involved in, and said deliberation was a better way to get the public involved in decision-making about important issues.
• The evaluators noted that the capacity of the public to participate in such events also needed to be developed. They said that both goals could be achieved with more opportunities to tackle public issues through deliberation, and with tangible evidence that the effort is worthwhile.
• Recruiting participants for deliberative events is challenging. In some locations, the Council struggled to attract sufficient numbers. Recruiting Māori and Pacific participants, and people from new migrant communities, was a particular challenge. Placing newspaper advertisements helped with recruitment, but the Council found that self-selected participants were less willing to take up the central challenge of deliberation — to confront their own values and views, and explore those of others. Community groups were extremely helpful in recruiting participants, but there are questions about whether this approach achieves sufficiently diverse representation.
• The majority of participants were women. With the face-to-face events, this was doubtless influenced by the timing of sessions (daytime) and the fact that many participants were recruited via community organisations in which women are especially active (kindergartens etc). But it also suggests that pre-birth testing may be seen by many in the community as primarily a 'women’s issue'.
• The Council found the online deliberation forums attracted participants who had not previously been involved with the Bioethics Council. Placing advertisements on Trade Me generated considerable interest. Women were again in the majority. Participation in online deliberation is most available to people who have access to computers and familiarity with accessing information online.
• Many participants in the face-to-face events felt the time allowed was too brief, especially for exploring the trade-offs inherent in various approaches. The Council noted a difference with the online forums where, over several weeks, participants’ positions and attitudes visibly moved, however, even here participants felt frustrated by time constraints:
  “I feel like I've gone to a concert and left just after the warm-up act and before the main performance — it would be great to do more work on this somehow,” said one contributor.
• More work needs to be done on finding ways to capture and report on the richness of the face-to-face discussions. Asking participants to write down the results of their discussions did not always capture the detail and depth of group discussions.
• Participants and those running deliberative events need good information, both about the topic under discussion (material presented in everyday language that is still technically accurate) and about the deliberative process itself.
• Facilitators need to have a good understanding of the principles of deliberation, and must be able to adapt and use them in a range of situations.

Case study uploaded December 2008.