The need for public debate in relation to health and biomedicine
The characteristics of biomedical developments, and the ways in which they have an impact on people’s lives and the broader societal context, set them apart from many other kinds of technical or organisational change. They have particular implications for human rights because they often raise concerns about integrity, dignity, autonomy, privacy, justice, equity and non-discrimination among human beings.
Biomedical developments often require long-term strategic commitments that raise questions of collective values, aims and visions of the ‘good life’, including questions about how benefits should be distributed within society. Governance In this guide ‘governance’ means the accountable use of power or authority to set, monitor, and enforce standards and behaviours within systems or organisations. It can mean both steering people’s behaviour and ensuring that they are held to account. Governance can be given effect through compulsory and non-compulsory measures (legal provision, licensing systems, professional norms, codes of conduct, recommendations etc.,). Governance can be a function of both public and private actors. that is guided only by political ideology, or that considers only limited technical questions such as the potential benefit and harms of treatments, or that responds only to existing preferences, may fail to address adequately these broader and longer-ranging questions.
Given the potential effect on the lives of individuals, it is important that members of the public are informed about biomedical developments and can formulate, communicate and interrogate their views. This is important because it enables the public to take part in shaping policies and strategies for their society, and for building the competence of individuals to make informed decisions about their own health and welfare. It is equally important for policy makers to be aware of different opinions and diverse values among the public in order to respond to them.
Public debate contributes to the responsible introduction of biomedical developments and technologies in the health sector.
The long-term implications for individuals and for the future of society require democratically mandated decisions that are informed by shared values and demonstrate respect for human rights.