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IEU Public Lecture - Should Genes be Public?

18 February 2014

On the 18th of February, the MRC Integrative Epidemiology Unit at the University of Bristol hosted its inaugural public engagement event at M shed, Bristol, debating ‘should genes be public?’

On the 18th of February, the MRC Integrative Epidemiology Unit at the University of Bristol hosted its inaugural public engagement event at M shed, Bristol, debating ‘should genes be public?’ Over 200 members of the public attended this event. Recent large-scale initiatives to sequence the DNA of thousands of individuals in the UK were the focus of the discussion. Three outstanding speakers representing Genomics England (Professor Sir John Burn), the Personal Genome Project (Professor Stephan Beck) and UK Biobank (Professor Sir Rory Collins) gave their thoughts on the benefits, risks and issues of making our genomes public before a seven-strong panel of experts hosted questions and comments from the audience.

Prof. Burn opened the event representing Genomics England, a company recently set up by the Department of Health to deliver the 100k Genome project. Prof. Burn’s engaging talk pointed out the many advantages of using individualised genomic data for managing personalised care. He used numerous examples of how this could be done, including using variations in the genetic code (Single Nucleotide polymorphisms, SNPs) to manage warfarin doses and targeted use of PARP inhibitors in cancer. Although he acknowledges the immense technology challenges still being faced, he told the audience ‘personalised medicine is now here’.

The second person to address the packed audience was Prof. Stephan Beck representing the Personal Genome Project. While the 100k Genome Project is sequencing people with mainly rare diseases and cancer patients, the Personal Genome Project is recruiting those who Prof. Beck refers to as ‘information ultras’: essentially altruistic people who are willing to donate their genomic sequence and other information about themselves for analysis by the scientific community. The audience heard from Prof. Beck that open access data is much more widely accessed than data from managed resources (where a researcher might need to request access to data) and this kind of open resource will lead to accelerated research alongside reduced costs for managing the data. The audience was told about the non-anonymous nature of participation in this project as the founders believe that it is difficult (or perhaps impossible) to guarantee anonymity in the future.

The final speaker before the panel discussion was Prof. Rory Collins who leads the UK Biobank, a major study following the health of half a million people in the UK. Throughout his presentation Prof. Collins highlighted the importance of phenotyping and the understanding of the whole person as the future of health research. Prof. Collins used the example of coronary heart disease to describe to the audience just how many people need to be recruited into studies to identify the risks of factors such as blood pressure and age in future disease. He concluded by saying that even studies as large as the UK Biobank are not likely to be big enough and that we are going to see collaboration between multiple large studies in the future.

The speakers then joined other panel members for discussion and questions from the audience. Panel members included Professor Paul Burton (University of Leicester), Professor Ian Craddock (University of Bristol), Professor Marcus Pembrey (Institute for Child Health, University College London) and Dr Jane Kaye (Centre for Health, Law and Emerging Technologies, University of Oxford). The issues raised were diverse, highlighting both the huge potential benefits of generating these resources as well as the ethical challenges in the face of an unpredictable future.

Event organiser and IEU programme lead Professor Caroline Relton said: ‘The MRC IEU chose a very topical issue as the focus of its first major public engagement event, focusing on recent initiatives to generate an unparalleled amount of genetic data on very large numbers of participants. The University of Bristol has been involved in population based studies, most notably the Avon Longitudinal Study of Parents and Children (or Children of the 90s), which has increasingly incorporated genomic and other omic data (including epigenomic and metabolomic data) to enhance the value of the study in addressing the determinants and consequences of health and disease. This event allowed us to present the latest developments in population-based genomics and debate the risks and benefits posed by such activities. The event gave all members of the MRC IEU the opportunity to engage with current issues relating to whole genome sequencing of large populations and demonstrated to the wider public our concern about the responsibilities inherent in data generation, access and usage.’ A member of the public reported in the evaluation: ‘What I enjoyed most was the opportunity to learn more about genetic research and its implications. I think it is something the general public should be more informed about, particularly in the realm of moral and ethical issues raised by advances in science and technology. The question is how to engage people more - science is not always well reported in the media, particularly the press’.

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Report by Hannah Elliott, PhD, Oak Foundation Research Fellow, MRC IEU

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