Dr. Sarah Cunningham-Burley
Department of Public Health, University of Edinburgh
Dr. Cunningham-Burley's presentation looked at the way in which quality of life issues are affecting medical decisions, including decisions about genetic testing, and related this to a study of how the general public views these issues.
Public Involvement - Expert/Lay Divide
Experts see the opinion of the general public as 'uninformed'. However, we all have valid knowledge on a range of issues and public involvement can be a safeguard but not without other structural mechanisms in place.
Recent research has outlined this area of 'lay expertise'. Non professional experts were able to discuss complex issues in relation to the new genetics with astute understanding of the limits of genetic explanations, the tensions between individual and collective interests and the issues of responsibility, choice and control. An informed, inclusive public involvement in this area requires recognition of the importance and validity of such expertise and the need for supportive environments for the circulation of views and attitudes along with increased democratisation in decision-making in all areas of science. Without this we have only a professionally driven debate where scientists and clinicians, often acting with the best intentions, manage the social implications of the work through advisory committees etc.
Eugenics and Geneticisation of Disease
Dr. Cunningham-Burley stated that developments in molecular genetics open up questions, which should have been aired before i.e.. on Down's syndrome. Underlying this is a concern for quality of life and the value judgements inherent in this. The consensus is that the new genetics raises social and ethical issues because of the close association between genetics and eugenics. Promises of treatment leading to enhancement of quality of life are value laden and can have a negative outcome.
Quality of life
Quality of Life Measures were developed by health professionals and academics to avoid the inherent subjectivity of doctors when selecting patients for particular treatments i.e. kidney dialysis.
Core Domains of Quality of Life
(from 'The Missing Measurement in Health Care - Lesley Fallowfield)
These measures are worrying in that there is very limited recognition of the social domain which has been articulates almost entirely in individualistic terms. Little recognition has been given to the notion of how the wider environment affects quality of life.
Elsewhere the book is littered sith similar phrases where the underlying values prioritise health and physical functioning and where quality of life equates with not requiring assistance in a range of activities and skills. This is a very restricted view, measured at the level of the individual and must be challenged. Although there is debate about the validity of some standard measures of quality of life, they are still widely used.
Putting a monetary valuation on life using various decision theory models has been described as a "rational and efficient way of allocating the scarce available resources".
One outcome of this argument is to allow "cost effective" decisions to mask eugenics. If the rhetoric is changed, the question is whether it can ever be non-discriminatory.
Quality of Life and Genetics
Focus groups within the recent study addressed the issue of quality of life and attempted to discuss the social and cultural impact of the new genetics. The main concern was 'where to draw the line' below which everything is unacceptable? Opinions varied widely but the baseline excluded eugenics as practised in Nazi Germany or pre-natal testing and abortion on the grounds of trivial physical characteristics. There was concern about the development of tests where no treatment exists and perceived coercion to terminate pregnancies where abnormalities were diagnosed.
We probably cannot avoid dealing with the quality of life issue. We may not be able to draw a firm line on what is acceptable but we have to have social consensus on what is a reasonable way to behave.
Issues of Concern