Genomics in Society: Facts, Fictions and Cultures
British Library, St Pancras, 96 Euston Road, London NW1 2DB, UK
23-24 April 2012
The conference 'Genomics in Society: Facts, Fictions and Cultures' marked the 10th anniversary of the Economic and Social Research Council's Genomics Network, and also the passing of nearly ten years since the completion of the Human Genome Project.
The mood was set by an image that dominated the programme and holding slides: an engraving of Buenos Aires – taken from Charles Darwin's 1839 book The Voyage of the Beagle – altered by artist Deborah Robinson to incorporate the letters that represent the four DNA bases.
This juxtaposition of knowledge from different eras of biology was fitting for a conference where subjects that seemed comfortably familiar were examined from thought-provoking new angles. This was the case with the opening keynote speech, in which Professor Anne Fausto-Sterling used the 'epigenetic landscape' of CH Waddington – the famous model that Waddington, the founder of epigenetics, devised to explain biological development – to explore the question of how babies become boys or girls. The conventional answer is that babies come into the world already differentiated by their anatomy, but Professor Fausto-Sterling left us in little doubt that there's a lot more to it than that.
A session on 'Genomics and identity politics' included a barnstorming critique of the UK's National DNA Database by Dr Steve Sturdy, and Dr Gill Haddow's examination of the way new technology and law might change the way we understand family connections. 'Art-science as public experiment' covered a range of different projects combining science and art, from hi-tech (a laboratory-based liquid handling robot, reprogrammed in order to be incorporated into music and film) to lo-tech (fridge magnets and a paper aeroplane).
'The politics of race and family' was a session we were particularly interested in, following Progress Educational Trust (PET)'s recent project 'Genes, Ancestry and Racial Identity: Does It Matter Where Your Genes Come From?'. The session provided striking critical perspectives on the way genetics and race are understood today, with Professor Jonathan Kahn explaining the perverse dynamics whereby racial categories are becoming mandatorily incorporated into US patent claims; Dr Venla Oikkonen looking at the way race is dealt with by online genealogy services; and Ernesto Schwartz Marin enlightening us as to the febrile politicisation of genetic research in Colombia and Mexico.
Scientist turned fiction writer Ann Lingard closed the first day of the conference, weaving various historical and biographical aspects of genetic science into a compelling narrative, and addressing some of the concerns raised in her recent BioNews article about genetic abnormalities and voyeurism.
Dr Sandra Soo-Jin Lee picked up the baton the following morning, discussing the marketing of the personal genome and the concomitant tendency to believe that we have a 'right' to access our genetic information. Then Dr Barbara Koenig presented her current work in progress, concerning the use of a new genomics product by an established American healthcare provider, a subject we hope Dr Koenig will write about for BioNews in the near future.
Dr Richard Tutton chaired a lively session on whole genome sequencing, taking the sensible decision to sacrifice some of the lunch break in order to allow more time for questions. The hot potato of how to handle incidental findings from genetic research was examined by Dr Debra Skinner, and was also addressed in a joint presentation by Alison Hall and Dr Anna Pokorska-Bocci of the PHG Foundation.
Dr Paula Saukko presented autoethnographical research using a genetic test offered by the company 23andMe, while Dr Effy Vayena presented the first Swiss data on direct-to-consumer genetic testing. Such data has not previously been forthcoming, because genetic testing without a medical prescription is banned in Switzerland.
Professor Margaret Lock's keynote presentation 'Genes as tools for the prevention of Alzheimer's disease' discussed the huge increase in tools for identifying Alzheimer's disease, and diagnosing other neurodegenerative conditions, over the past two decades. Professor Lock discussed the uncertainty that often follows a diagnosis of Alzheimer's, and provided insights into the far-reaching social implications of these new diagnostic tools.
Alzheimer's is widely described today as an epidemic or a 'tsunami', in both professional literature and the lay media. Less remarked upon, by contrast, are ongoing arguments in the medical world about the entanglement of Alzheimer's with 'normal' ageing, and the repeated efforts to demarcate what exactly constitutes Alzheimer's. It was clear from Professor Lock's talk that uncertainty about the relationship between ageing, dementia and Alzheimer's permeates scientific and public discourse, sitting uneasily with the urgency that often surrounds the task of curing or preventing Alzheimer's altogether.
'Ethics and attitudes to carriers' featured a joint presentation by Dr Jessica Mozersky and Dr Dena Davis on breast cancer, Ashkenazi Jews and so-called 'liberal eugenics'. Again this was of considerable interest to us, not just because of our recent work on genes, race and ancestry, but also because it touched on another subject of abiding interest of PET – consanguineous marriage. The presentation was an excellent example of fruitful academic collaboration, with Dr Mozersky adopting a more empirical approach and Dr Davis a more theoretical one.
Finally, Professor Celeste Condit from the University of Georgia closed the conference with the keynote presentation 'Can humans use our "more than rational" capacities to steer our species-making capacities?'. She argued for a greater role for pathos (as distinct from ethos and logos in Aristotle's modes of persuasion) in decision-making, criticising the World Health Organisation's approach to disseminating research into the H5N1 virus (or 'super flu'), and calling for more multi-disciplinarity and greater public participation.
From the genetic to the ethical to the logical to the pathetic (in the classical, non-pejorative sense of that last category), 'Genomics in Society' offered plenty of food for thought. Watch this space, as PET continues to digest it.