New Genetics and Society
John Burn at Imperial College, London
3 October 2002

Siobhan Jones

As long as there has been society, genetics has had a significant influence on it, as John Burn noted at the very beginning of his talk. And yet the next hour was notable far more for its descriptions of genetics than of social effects.

Burn did seem relatively well informed on such issues, but had clearly decided that it was necessary to redress the balance of negativity often that often surrounds discussions of science and society. Consequently, he treated us to a wonderful presentation on some of the fascinating developments in human genetics today.

Clearly he is in a position to know. John Burn is a clinical geneticist who now heads up the Institute of Medical Genetics at Newcastle. His explanations of some of the impressive uses of genetic technology today helped prove that genetic technology can be a force for good - it can and it does save lives. Particularly in relation to single gene diseases, the decoding of the DNA sequence has allowed geneticists to identify those at risk of hereditary diseases before symptoms appear hence enabling earlier diagnosis and treatment.

Another promising area of genetic technology can be seen in work aiming to target drugs more accurately to individuals through genetic information. Burn gave the example of a recently developed drug which hindered the growth of a type of leukaemia. The drug was identified by considering the genetic sequence of the anomaly peculiar to that disease and the identification of a protein unique to the faulty gene, which could then be targeted.

These techniques of targeting in both preventative and curative healthcare clearly have enormous implications, both social and economic, for our ideas about health and how the NHS should be run. At present, genetics tests are only available for 300 of the 1000 diseases for which the gene sequences are known. Once genetic tests are developed for more of these diseases, what are the implications for patients and their families? How many of these tests should be available on the NHS? And how should we respond to them given that very few treatments are yet available? In the case of prenatal genetic diagnosis the only possible 'treatment' is abortion. Is knowledge for the sake of it worth the emotional burden?

This is a potential problem that Burn does acknowledge. Once these tests become a reality, we may start to realise that everyone has a defect that might class them as less than healthy. Coupled with prenatal testing and diagnosis, this could cause serious problems and may increase the number of people desiring terminations - is this ethical? How far should we let the quest for perfection go? And who should make these decisions, the parents, the doctors or the state? These are questions which John Burn did not mention, but which are clearly important in deciding the future of regulating genetic technology.

However, Burn ended his talk on a positive note emphasising the importance of the UK's position in leading the way in ethical genetics research - perhaps most importantly in stem cell research. He emphasised the importance of considering the ethical implications raised by the technology alongside the technology itself.

Burn was then joined by three panellists, Professor Nikolas Rose, a sociologist, Emily Jackson of LSE, a lawyer specialising in medical technologies and Professor Anna Kessling of Imperial who works with the London Genetic Knowledge Park.

The panellists brought a slightly different dimension to the talk, they were all more focused on the potential social effects of genetic technology, though with varying degrees of optimism.

Nikolas Rose talked about the burden of knowledge that would come with the predictive tests as well as the burden of uncertainty. He used the classic example of Huntingdon's disease, although the test will tell you whether you will get the disease (it is one of the few tests that has almost 100% accuracy) it will not tell you when the disease will onset, how severe it will be and the consequences are likely to be. Can and should someone have to live with that burden of knowledge and ignorance?

Anna Kessling responded that actually in 50% of those individuals taking predictive tests do not have this oppressive mixture of knowledge and ignorance - they discover that they are not at risk - this knowledge can be tremendously comforting. She argued that we should 'detoxify' genetics. We should make it less of a scary word and more of like other information about ourselves that we distribute relatively freely, for example height, cholesterol level or blood pressure. John Burn agreed with this and suggested that we are looking forward to a time when 'genetic tests' will largely cease to exist - they will become a normal part of medical practice.

Emily Jackson focused on the concept of risk, emphasising that it was something that majority of people found hard to understand. The individual's chance of catching a particular disease is always 0% or 100%, it is only in statistical populations that other figures can be calculated. She argued that we need to focus more on the individual, redress the influence of the media and provide counselling and reassurance of confidentiality. She seemed to believe that the impact of genetics on society could be better regulated by focusing on individuals.

This distrust of the media was present in most of the comments, and whilst it is often justified - the media does twist things and place its own angle on the news stories - this seemed to be a way of escaping the deeper issues that do affect society. In fact this was a major characteristic of the whole session, it was far more about the genetics than it was about society. This seemed to please many members of the audience and it does help to remind people that genetics has many benefits and should be encouraged. However, a real sense of the issues that face society when discussing genetics was lacking.

The examples given by John Burn were wonderful, and yet by his own admission they only related to single gene diseases - diseases for which identification, tests and potentially cures are relatively easy. He talked about leukaemia, bowel cancer and a form of dementia - virtually everyone agrees that genetics should be used to help these people - these are not the controversial areas. It is the application of genetics to complex traits that is going to cause both social and economic problems in healthcare and in society more generally.

John Burn was a highly talented speaker who was wonderful at communicating complicated aspects of science. However, for a talk on 'New Genetics and Society', there was much about the genetics, and too little about the society.