2. Deliberating about pre-birth testing: a new approach

2.1 About deliberation

The world over, there is a trend to greater public participation in government decision-making. In our own country, legislation such as the Resource Management Act 1991, the Local Government Act 2002 and the Human Assisted Reproductive Technology Act 2004 require mandatory public input into a wide range of government activities. As citizens, we have come to expect — and demand — a voice in policy decisions that affect us.

Traditionally, public participation has taken the form of consultation. Experts and policy-makers identify issues and develop questions; members of the public are invited to respond to these agendas through written or oral submissions to commissions, select committees or panels.

In recent years, new approaches have emerged which more actively involve the public in setting the parameters of the discussion and framing the issues under scrutiny. Rather than being the subjects of consultation, ordinary citizens are able to participate in deliberation with decision-makers and other members of the community. Deliberative events are conversations in which citizens define and shape the issues, and listen to the arguments of others — as well as saying what they think.

The importance of active public participation in policy decisions involving science, including biotechnology, is being increasingly recognised. But how might effective engagement between the non-specialist public and the world of science be achieved? In the past, the engagement has often been one way. Policy-makers have assumed that, by arming the public with scientific facts, people will be better equipped to understand (and perhaps embrace) new technologies. However, as ongoing public resistance to developments such as genetic modification suggests, the mere availability of information does not in itself generate greater understanding, let alone acceptance.

The need for better forms of communication and exchange about new technologies and their uses has become increasingly clear. Not only do ordinary citizens have the right to express their views about developments that affect them, but they can also offer insights and knowledge that complement and enlarge the knowledge of experts. Science and technology are not just specialist and technical forms of knowledge — they have social, cultural and spiritual dimensions as well, which need to be reflected in policy decisions.

For all these reasons, public deliberation has emerged as one of the most effective ways for decision-makers, experts and the public to approach especially challenging problems, including those linked to biotechnology. While it has much in common with dialogue, deliberation goes beyond it. Deliberative forms of engagement require people to do more than express their views. They have to explore and compare a range of viewpoints or approaches, and find courses of action that work in the best interest of many different people. Some other essential features of deliberation are:

• It begins from a different starting point than traditional forms of consultation, where experts or policy-makers frame the issues they believe to be important and present them to the public. In deliberation, the beliefs, concerns and values of the public are used, firstly, to frame potential options and then, to determine the best course of action.
• Participants in deliberation have to weight the benefits and the consequences of these potential options.
• Participants usually progress from a stance based on personal experience and opinion, to judgments based on a wider range of information, experience and argument. In deliberation, people talk through a problem, rather than talking about it.
• Deliberation promotes civic involvement and responsibility.
• It can increase trust between the public and decision-makers/government agencies.
• It can produce a unique form of non-expert or ‘socially constructed’ knowledge that synthesises a range of viewpoints and experiences.
• It can turn personal opinion into sound public judgment.

In other words, a deliberative approach has the potential to produce better, longer-lasting and wiser policy decisions.

Toi te Taiao: the Bioethics Council considers that the public deliberative approach used to produce this report could be a model for government agencies interested in involving citizens in the development of public policy and regulation in many different fields.

2.2 The Bioethics Council’s use of deliberation

In 2007, the Bioethics Council decided to use a specific set of deliberation processes to engage the public in its work on pre-birth testing. Based on the National Issues Forums approach, we followed a three-stage process. (For more about the process — including full details of when and where deliberative events were held, how they were conducted and who took part — please see Appendix B and C. A diagram showing the key stages in the process is in Appendix A. Readers may also refer to the Council’s evaluation reports, available at www.bioethics.org.nz.)

Stage 1: Framing the issues

To inform the Council’s thinking, we read widely in the subject, conducted a literature review and were briefed by experts. Then we interviewed 11 people with significant expertise and experience in various fields related to pre-birth testing. These ‘key thinkers’ remain anonymous. All these resources contributed to our understanding of the issues and resulted in a brochure outlining pre-birth testing’s important scientific, cultural, ethical and spiritual aspects.

To begin engaging the public, everyone on the Bioethics Council’s mailing list was invited to register their interest. A wide range of government and non-government organisations were also asked to publicise the project. A brochure was prepared outlining the scope of the topic, and sent to anyone willing to attend a day-long ‘framing’ meeting in their town or city[The brochure is available at www.bioethics.org.nz] where the issues involved in pre-birth testing would be identified or framed. These people also received a questionnaire to gather the views of friends, family and colleagues.

Fifty-six participants — most of whom had interviewed at least five other people beforehand — then attended what were referred to as ‘framing days’. Six were held around the country during July and August 2007, including a hui for Māori and a Pacific fono. The goal of issue-framing is to bring ordinary members of the public together, so they can create a document that expresses the basic concerns behind the way people see an issue.

Four distinct approaches emerged from the participants’ discussions; approaches that reflected different and competing ways of dealing with pre-birth testing. 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 laypeople.[The Choicebook is available at www.bioethics.org.nz]

Stage 2: Deliberative events[For more details on the deliberative events and who participated, see the evaluation report by the Centre for Research, Evaluation and Social Assessment (CRESA) at www.bioethics.org.nz. A summary of the key findings from the CRESA report can also be found in Appendix C of this document.]

The Council recruited people for a series of face-to-face deliberative events around the country, identifying potential participants with help from NGOs, organisations and community groups with an interest in pre-birth testing and also using the Council’s own databases. In some areas, participants self-selected by responding to newspaper advertisements.

Eighteen events were held, including four hui and a Pacific fono. In total, 256 people attended. More than 80 percent were women. Many participants were involved in the health or disability sector in some way, either as professionals or volunteers. Many were parent(s) or grandparents, including of children with disabling conditions, while others had particular concerns about child disability. A high proportion had strong pro-life views, usually associated with Christian beliefs, and some were affiliated to pro-life groups. A small number were teachers in the area of biology, and a smaller group comprised students.

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 awareness-raising than policy development, and would perhaps have worked best as an initial (and very valuable) stage in a two-stage process.

Online deliberation

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. It also provided a mechanism to get feedback on the face-to-face events. The online interactions were designed to closely mirror those events.

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. Those who participated in the online processes were recruited by several methods, including high-profile advertisements on the TradeMe website. The online deliberation was hosted by Ascentum’s dialoguecircles.com platform, an internet-based toolkit that has been custom-built for online deliberation.

After the online deliberative phase ended, the Bioethics Council asked Ascentum to prepare an independent report analysing the online deliberation methodology and the nature of the public’s participation, and summarising the input collected. It is available in full on www.bioethics.org.nz, while a summary appears in Appendix B.

Stage 3: Evaluation

The pre-birth testing project showed that the engagement generated through deliberative methods is different from that created by traditional forms of public participation. Clearly, deliberation has an important part to play in a continuum of possible participatory techniques.

This section summarises the many valuable lessons about deliberation that have emerged from our work on pre-birth testing. As well as Council members’ own thinking, it also reflects the independent evaluation undertaken by the Centre for Research, Evaluation and Social Assessment (CRESA), which examined and commented on the deliberative project before it even began. CRESA staff then observed several framing events and public deliberations, distributed questionnaires to participants, analysed their responses and conducted follow-up phone interviews for the framing events.[The CRESA evaluation is available in full on www.bioethics.org.nz, and its summary and conclusions appear in Appendix C.]

Key lessons:

• 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 deliberation, 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.
• Participants considered that there was room for those managing and facilitating deliberation to develop their skills and understanding of the process.
• 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, we 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 we 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’.
• We found the online deliberation forums attracted participants who had not previously been involved with the Bioethics Council. Placing advertisements on TradeMe 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. We 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.

2.3 Four approaches to pre-birth testing

To encourage New Zealanders to discuss pre-birth testing, the Bioethics Council developed a Choicebook reflecting the values, interests and concerns raised by participants in the framing exercises. The Choicebook set out four approaches to the issue, which provided the starting point for the deliberations. 

The four approaches are not exclusive or absolute — an individual may be attracted to aspects of several approaches or to a single approach in its entirety. They simply represent four different ways of thinking about pre-birth testing that reflect the interests, concerns and motivations of the participants.

The approaches are summarised below, together with a selection of comments that show how a particular group of participants approached and explored each of the four approaches. These conversations have been selected not so much for what people said as for how the discussion unfolded over time. They are effectively snapshots of the deliberative approach in action — people adopting new perspectives as they become more comfortable with each other, asking questions, considering the benefits and tradeoffs that various positions entail, and having their own thinking challenged, modified and enlarged.

One: ‘My choice, my right’

This approach holds that only the parent(s) of an unborn baby should decide whether to have pre-birth testing, and what to do in response to the results. Nobody else should be able to interfere with these decisions, including government and ethics committees. This approach promotes personal responsibility and the freedom to make personal choices. It calls for the removal of all restrictions on PGD, on pre-birth testing in general and on the decisions made as a consequence of testing.

Two: ‘Life is a gift’

People who support this approach oppose abortion or the destruction of embryos because they believe every embryo or foetus has a right to life (whether on religious or other grounds). Moreover, they say that pre-birth testing is founded on the assumption that the life of someone with a disability has less value than the life of someone who does not. This approach suggests that when it comes to unborn children, we should interfere with nature as little as possible — including natural genetic diversity.

Supporters say pre-birth testing should not be permitted at all, or only if it does not lead to abortion or the destruction of embryos. Other actions favoured by this approach include increasing support for people with disabilities and their families, and more education/information to better equip people to make complex moral judgments.

Three: ‘Tāngata whenua’

This approach says that it is important that Māori values and the Treaty of Waitangi are part of New Zealand’s policies on pre-birth testing. It also calls for Māori to be better informed about the issue so they can engage with it, develop appropriate tikanga, and ensure these tikanga are respected by health providers and scientists.

This approach says Māori must be involved in developing policy and information resources. It calls for Māori women to have better access to pre-birth testing and to antenatal care in general, and for more meaningful participation by iwi, hapū and individuals in research projects that use their genetic material.

Four: ‘It’s about information, knowledge and the public’s involvement’

This approach calls for better information about pre-birth testing, made available in more accessible forms nationwide. Information is needed both before any tests are carried out (so that the parent(s) fully understand the benefits, risks, accuracy and implications of proposed tests) and afterwards (so they can make informed, unpressured decisions in light of the test results). Individuals’ decisions about pre-birth testing must be based on more than medical information alone — their cultural/spiritual/ethical perspectives, experience and knowledge are important too. Moreover, the public also needs high-quality information about future developments in pre-birth testing: possibilities such as ‘designer babies’ challenge everyone’s fundamental beliefs about what it is to be human and ‘who gets born?’

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