Public Debate – why and how

The Committee on Bioethics (DH-BIO) of the Council of Europe (CoE) has issued a Guide to Public Debate on Human Rights and Biomedicine as a tool to assist member states in involving the public in discussion on biomedical issues and the possible concerns they may have on human rights, integrity, dignity, privacy, equality, nondiscrimination and justice in general

Fostering a culture of democracy gives us a right to speak, and yet this right is often taken up by the more vociferous among us, who trample over those who have less of a voice and indeed who mock those who oppose them. If I had that problem, what help would I require from society? Is society listening to my plight? Is it democratic that we are witnessing both sides of the argument on euthanasia calling each other “egoists” – I have witnessed both on television and in the classroom, individuals saying that those who do not want euthanasia do so for “egoistic” reasons. The converse can also be said to be true, unless we try to somehow understand each other.

Why public debate? The main reason is that if well-coordinated it can (and should) take the burden off the political agenda of parties and give government a true reflection of what people think. It is only too often that politicians have been encouraged to introduce a morally sensitive issue because they see that the majority want it and/or on the other may be commensurate to their political agenda. If someone does not want this issue but on the whole wishes to vote for that Party, he/she would have to swallow the bitter pill. Conversely governments have been put off from legislating appropriate medical care also because of ethical issues, as occurred with the IVF controversy. We now face further issues and doing these without listening to and educating people on the relevant issues will lead to reducing moral issues to a statistic of simple majority. Proper public debate should also be on the moral agenda, rather than liberal or conservative indoctrination.

We often make choices even based on what our Party is advocating for or perhaps because we are influenced by friends, family, religion, and so on. Some of these may be justified but not knowing the facts is ignorance notwithstanding. Public debate on the other hand leads people to express their feelings and thoughts and allows them to listen to others in a more protected environment. It makes them realise that ethics is not only a feeling but must be based on rational thought. Moreover, that rational thought is more than one had in mind. We often affront a debate with what we believe are rational ideas. But we would not have listened to the counter ideas. For example, the experience of countries, which introduced prenatal diagnosis, has led to a significant decrease of babies with Down’s syndrome through methods of selective abortions. This heightens the risk of marginalisation, according to the Committee of Bioethics of the CoE, of people with Down’s syndrome, compounded by the problem of equity of access leading to people in vulnerable groups having a higher incidence of such genetic conditions further increasing marginalisation – there the consequence therefore of an impact on social norms and equity.

The speed of developments often causes legal gaps which can also arise from legislators not knowing the implications of the introduction of certain laws. Moreover, politicians are often guided and appraise situations “only through aggregated opinion in environments that offer little opportunity for challenge or accountability, such as social media”. Social media can create polarised debate and without efforts to promote an inclusive public debate. The voices of marginalised and vulnerable groups is often elbowed aside or drowned.

The only debates we usually have in Malta are those we find on television, which allow for certain comments, but which often may be directive in nature by the producers. Media is only informative and certainly does not give a comprehensive account of the issues. Therefore, the main local problems of public inclusion are the dominance of groups or institutions to guide the debate or even stifle it, and, secondly, the reliance only on media or party-politics.

The reasons for debate (as described in the DH-BIO document) are ethical, to make better-informed decisions and to seek legitimacy. The objectives are to inform the public, to identify the issues of concern, to gather evidence of public views and to increase participation. Early involvement of the public around “values, hopes and fears” can increase the awareness of people at an early stage, when a more formal debate and collection of information is done at a later stage. This gives time to people to reflect on the issues and to ask for opinions.

The recommendations are also that the debate must be effective both through its design and its conduct. As far as design is concerned the CoE recommends:

(i) a commitment of resources (let’s not fool ourselves and think that this does not come at a cost in time, people and money);

(ii) Meaningful participation, for example framing of questions in an unbiased way and using professional unbiased people, such as academics and those involved in policy; (iii) Accessibility and inclusion – it is often the case that discourse is often structured by imbalances of power and knowledge, and accessibility is not necessarily equal to all, implying the importance of design of questionnaire, choice of venues, language, etc.; and finally, (iv) Oversight management, which may take the form of an oversight group to see that things are going well.

When it comes to conduct, we must ensure that participation is fair, guarantee privacy where necessary (for example communicating information without disclosing the identity of the individual) and transparency of interests. At the end of the day it removes the burden of certain decisions from the shoulder of politicians and puts the moral weight on the public in general – the social and normative values. All this involves, however, a political commitment to public debate, accountability, a thorough evaluation process, ensuring a continuous process – not just a one-time event and embedding these debates especially in area like bioethics.

Ethics is not restricted to the learned few. Academicians can however point out certain analysis and probably have read about the issues throughout their carriers. They can help construct the debate but need to be ware not to stifle. We have to accept that we are living in a changing world and that it is better to help and engage the public to balance the ethical questions and bigger moral issues with what is to be gained, rather than having decisions imposed upon them by the big players such as political parties, NGOs and institutions. Liberalism need not challenge culture if we include the people who represent that culture in fair ways as described in the document. It is, at the end of the day, an examination of conscience of political parties and institutions to see if they have been doing a good job and to reassess their commitment to their own ideals.

Public debate on end of life in France revealed that many considered euthanasia an option, but what overshadowed this was the fact that most agreed that there was a lack of adequate palliative care to all which may have influenced the opinion on euthanasia. This ought to help governments change tack if they do not wish an issue to be introduced because of lack of action.

Pierre Mallia is Professor of Family Medicine and Patients’ Rights and teaches at the University of Malta. He chairs the Bioethics Research Programme of the Faculty of Medicine and Surgery. He also chairs the Bioethics Consultative Committee. This article is his personal opinion and does not represent the opinion of any committee or Board he serves on.