Elsevier

Health Policy

Volume 85, Issue 3, March 2008, Pages 314-320
Health Policy

Making policy decisions about population screening for breast cancer: The role of citizens’ deliberation

https://doi.org/10.1016/j.healthpol.2007.08.007Get rights and content

Abstract

Objective

To test a method of assessing whether a community of interest – when well informed – would be prepared to support or reject a public policy decision about cancer screening. In particular, whether the New Zealand government should offer free mammography screening to all women aged 40–49 years.

Methods

Eleven women aged from 40 to 49 years, randomly selected from the electoral roll, agreed to participate in trial of a citizens’ jury: a deliberative method of gathering the views of the public. Only selected aspects of the jury method were trialled. Participants met over a day and a half to hear evidence from expert witnesses with differing views and to deliberate the verdict.

Results

All but one woman changed their minds during the jury process, and voted against government provision of mammography screening in this age group. The main reasons reported were the inaccuracy of the test and the potential for harm, and the lack of firm evidence of saving lives in this age group.

Conclusions

A deliberative ‘citizens’ jury’ approach is a feasible way of eliciting a well informed, considered community view about screening or other population health initiatives. Pro-screening views of affected populations may change when individuals are given accurate information and enabled to deliberate about benefits and harms. This method could be used to determine how complex benefits and harms are weighed by affected populations, particularly where experts and advocacy groups disagree.

Introduction

Screening is an intuitively attractive health intervention, and advocacy for new or extended screening programmes is common. However, there are harms as well as benefits of screening [1], and decisions to implement national screening programmes are not straightforward. Recommendations about their implementation are generally made by expert committees [2], who weigh the potential benefits and harms of a proposed programme [3]. Advocacy groups tend to focus on the benefits of screening, and when there is a perceived strong public demand decisions may be made by politicians despite the cautions of experts. This happened in New Zealand when the minimum age of eligibility for mammographic screening was lowered from 50 to 45 years [4], because of strong public advocacy.

Although expert groups weigh benefits and harms on behalf of and for the ‘good’ of the population, their weightings might be different from those of the people offered screening and so they may come to a different conclusion than the affected population would do if fully informed. One approach to enabling community views to inform screening provision is to provide detailed information about benefits and harms to individuals when they are offered screening and leave the choice to them [5], [6]. However, there is evidence that the provision of such information is done inadequately at present [7], and it may be unrealistic to expect every individual to absorb and weigh up a large amount of complex information [8]. In addition, when a government is considering funding a screening programme, it needs to form a view on behalf of the whole population about whether the balance of benefits versus risks justifies implementation. This requires a different approach to determining public preferences.

A citizens’ jury is one approach to public involvement in decision-making. Citizens’ juries bring together a panel of non-experts to be informed and to deliberate about a matter of public significance [9]. Key components of a citizens’ jury include: a steering group of relevant stakeholders, participatory representativeness, expert evidence and the opportunity for interrogation of the experts, deliberation, and the delivery of recommendations to those with the authority to act on them [10], [11]. We have trialled specific aspects of a citizens’ jury approach to public involvement in decision-making about a population-based screening programme. The specific aspects were: participatory representativeness, expert advice, the opportunity to interrogate the experts, and deliberation. The question for the jury was: Should the New Zealand government offer free screening mammograms to all women aged 40–49 years? Depending on the answer to this question, a follow-up question about the requirements for informed decision-making was asked. The reasons for their decisions were also sought.

Section snippets

Selection of jury members

A random sample of women aged 40–49 years was selected from the general and Māori electoral rolls for the study area (Māori are the indigenous people of New Zealand). Eighty women were written to and those who did not reply were phoned. Thirty-four women could not be contacted and 17 of the remaining 46 agreed to take part. From these, the first 12 women to reply were invited to attend. Women who had been diagnosed with breast cancer would have been excluded but none responded.

Selection of experts

Experts were

Results

Fig. 1 shows the process of selection of jurors and of the deliberations. Although 12 women agreed to take part, one did not attend the introductory evening (and so did not fill in the first survey) and another, who did attend the introduction, did not attend the subsequent sessions (and so did not fill in the second survey). Ten women attended all three sessions and filled in the surveys at the beginning and end of the process.

A range of ethnic groups was represented among the 11 women who

Statement of principal findings

After receiving information from experts and deliberating over 2 days, 10 of the 11-woman jury voted against free mammographic screening for women aged 40–49. Of the 10 jury members who had stated an initial opinion nine changed their minds. The main reasons that led them to the decision were the inaccuracy of the test (and the harms that can follow from that) and the lack of firm evidence of saving lives in this age group.

Learning about the existence of harms was a persuasive factor for the

Conclusions

We have trialled aspects of the ‘citizens’ jury’ approach, and shown that it is a feasible way of eliciting a well informed, considered community view about the desirability of a population screening programme. This process provides a different perspective from either interest-group advocacy or expert deliberation. Although the group who participated were initially in favour of mammographic screening in younger women, they changed their minds when presented with full information about the

Acknowledgements

We thank Jenny Elliot for facilitating the jury process, the jury members themselves and the experts for giving their time. The study was approved by the University of Otago ethics committee.

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