Secondary Science Professional Knowledge Programme Genetics and Medicine – Genomics, Society and Health Supporting information for teachers PROGRAMME SYNOPSIS A group of the UK’s leading experts in genetics, medics and bioethics discuss the prospects for modern genomic research in contributing to our future healthcare. Over the past three decades our knowledge about genetics has increased dramatically. New research techniques, such as genome-wide association studies have been developed to help identify the genes that contribute to common and complex diseases, while large scale ‘biobanks’ store genetic, health and lifestyle data that promises to inform future medical research. Professors Steve Jones, Jane Worthington, Dian Donnai and John Harris have come together to discuss a range of issues that arise from this new research. The discussion, chaired by Dr Ralph Levinson from the London Institute of Education, explores how our experience of medicine is likely to change. Will drug treatments become personalised? How much will we ever be able to predict about ourselves and our health through knowing our genome? This expert group also discusses what aspects of genomics should be taught in the classroom and the challenge of adapting teaching about an area of science that is constantly being updated. KEY MESSAGES How will genomics change our experience of medicine? Some rare diseases are caused by changes in a single gene. Most common diseases are brought about by the action of several genes, and by the interaction between genes and environment. Scientists use genome-wide association studies to investigate the entire human genome. They find differences in genes which correlate with common diseases. Genetic information provides us with knowledge which contributes to the bigger picture. Healthcare professionals will be able to use genetic information in addition to physiological data, family history, age and postcode etc, to consider personal health outcomes and offer tailored lifestyle advice. Knowledge of an individual’s genetic variation will help us to understand how and why people respond differently to medicines, potentially heralding an era of personalised medical treatment. Pharmacogenetic testing is currently carried out to discover different responses by patients to a small number of drugs prescribed through the NHS. The pace of genetics research is increasing rapidly. New technologies will impact on diagnosis, prevention and potentially treatments for disease. What is the predictive power of genomics? Results from genome-wide association studies are presented as a risk of developing disease. Some genetic variants confer high risk but most genetic differences have subtle effects but can act cumulatively. Genetic differences can increase or decrease probability of developing disease. The experts explore the implications of this increased knowledge and the choices it poses, for example: How should companies offering all sorts of genetic analysis of individual’s DNA, be regulated? Who owns genomic information? Will it be accessible to employers, life insurers? Do people have the right to withhold their genetic data? Should policies be put in place to deal with unanticipated or unexpected results from genomics research? What issues do large-scale genetics studies raise? UK Biobank is a project which will run for the next 25 years in which genetic, physiological and environmental information related to people’s health/disease is being collected. Scientists hope that this will be a useful resource that will show how our genes, lifestyles and health are linked. Some issues relating to Biobanks include: Is there an obligation for individuals to contribute to this research for the ‘greater good’? Should there be an ‘opt out’ system, rather than the opt-in one currently employed? Will knowledge of our genome lead to a greater personal responsibility for our health? Will large-scale studies move us away from the gold-standard of informed consent? USEFUL WEBSITES Nowgen www.nowgen.org.uk Genome British Columbia http://www.genomicseducation.ca/ National Human Genome Research Institute (USA) http://www.genome.gov/Education/ Wellcome Trust Case Control Consortium http://www.wtccc.org.uk/ UK Biobank http://www.ukbiobank.ac.uk/ Nowgen is a leading centre for genetics in healthcare and sets out to inform and improve the practice of genetic medicine. Through the Nowgen Schools Genomics Programme we aim to narrow the gap between genomics research and classroom genetics.