In this the final of a five part series from the OPM blog investigating how Dialogue by Design, (part of the OPM Group), consult and report on contentious subjects, paying special attention to a recent consultation DbyD conducted on behalf of the HFEA, we’re reflecting on the publication of the report.
Last week the Human Fertilisation and Embryology Authority (HFEA) announced its advice to the Government on the ethics and science of mitochondria replacement – IVF-based techniques developed to give families at risk of passing on mitochondrial disease the chance of having a healthy child. Having considered the findings from the public dialogue carried out by OPM and Dialogue by Design, the HFEA states in its advice that there is broad public support for offering these techniques. The advice goes on to propose a number of policies and safeguards to be put in place, should Government proceed and change the law to allow the use of mitochondria replacement in UK clinics.
Media widely regard the HFEA advice to represent an important step towards the introduction of the techniques, which some describe as radical and others as controversial. The New Scientist has run a two-page article that includes quotes from consultation respondents and claims the advice could result in a ‘groundbreaking decision’. The novel nature of the proposed techniques was an important reason for the HFEA to carry out an extensive public dialogue on the topic, as our first blog in this series highlighted. Alongside other elements, including a representative survey and deliberative workshops, Dialogue by Design ran a public consultation inviting respondents to share their opinions on mitochondria replacement.
Over the previous weeks, we have looked under the skin of this consultation, and considered the processes, challenges, collaborative debates and creative solutions which go into shaping and facilitating a large-scale public dialogue.
In our first blog, we introduced the HFEA consultation and considered the specific challenges involved in consulting on controversial subjects. In part two, we reflected on the process of planning and designing a public consultation: establishing the important questions to ask, designing the structure and layout of the consultation, making unbiased information accessible to respondents, and opening different channels of response to maximise engagement with the public. In the third part of the series, we discussed the technical and ethical issues involved in analysing consultation responses, the importance of accurately capturing the essence of each response, and the development of a coding framework to allow analysts to do so. Finally, in part four we reflected on the process of report writing, the importance of conveying both range and nuance of responses, as well as the professional and ethical role of Dialogue by Design in safeguarding the integrity of the report.
Along with the HFEA’s advice to the Government, the public dialogue reports produced by OPM and DbyD were published. Dialogue by Design’s report summarises the responses to the public consultation and informs the summary of evidence, which considers the findings from all of the public engagement strands undertaken.
These findings were first presented to an independent Oversight Group, an expert panel set up by the HFEA to represent a range of perspectives. This panel oversaw the public dialogue from the very start and provided helpful guidance throughout, adding to its robustness.
The project manager at the HFEA, Hannah Darby, said of the public dialogue programme:
“This consultation was not a case of simply answering yes or no. The range of methods OPM and DbyD used ensured we were able to achieve the key aims of the public dialogue and consultation work. […] In formulating our advice for Government it was helpful to be able to refer and compare views of both informed and uninformed respondents and it was clear that upon hearing the outcomes of the consultation stakeholders felt the process had been robust and transparent.”
Throughout this series of blogs we hope to have illustrated the many challenges and considerations that are part and parcel of a public consultation process on a decision of great importance. The decision which this consultation will inform remains, as yet, unknown. However, we are confident that Ministers and MPs can refer to a considered and complete overview of public views when they prepare their decisions on legislating for mitochondria replacement. As the chair of the HFEA said recently: “The Government has asked us to take the public temperature on this important and emotive issue and that is what we’ve done.”