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Event Review: Genomics in Society - Facts, Fictions and Cultures

8 May 2012
By Sarah Norcross and Sandy Starr
Sarah Norcross is director, and Sandy Starr communications officer, of the Progress Educational Trust
Appeared in BioNews 655

Genomics in Society: Facts, Fictions and Cultures

Organised by the Economic and Social Research Council's Genomics Network

British Library, St Pancras, 96 Euston Road, London NW1 2DB, UK

23-24 April 2012

'Genomics in Society: Facts, Fictions and Cultures', organised by the Economic and Social Research Council's Genomics Network, 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.

30 March 2015 - by Professor Nils Hoppe 
One of the legally and ethically problematic issues regularly debated in the context of biobanks and tissue repositories is that of its potential for forensic use. When Anna Lindh (the Swedish foreign minister) was murdered in 2003, her killer was subsequently identified by way of matching DNA traces found at the crime scene with data contained on the killer's Guthrie card...
1 September 2014 - by James Storm 
Surrounding yourself with books and journal articles on human enhancement will see you encounter the word 'eugenics' on a regular basis. The unfortunate thing about this word is that it has become bound to a particularly nasty piece of world history - and for many people this association is a reason to wince, whilst rejecting whichever idea or theory it is trying to re-associate itself with today....
9 September 2013 - by Dr Anna Smajdor 
The prospect of eugenics has re-emerged in multiple new guises. The polarising power of this concept is part of its fascination, but this is not necessarily fruitful for debate or policy-making. In their booklet, Stephen Wilkinson and Eve Garrard address this problem...
20 May 2013 - by Chris Berry 
Earlier this month, over 180 delegates and speakers gathered in London for the final annual conference of the Economic and Social Research Council (ESRC) Genomics Network (EGN). After a decade of support from the ESRC, the EGN will officially draw to a close at the end of May...
11 March 2013 - by Matthew Thomas 
Commercial DNA tests claiming to reveal people's ancestors are little better than 'genetic astrology', according to scientists...
9 January 2012 - by Sandy Starr 
The Progress Educational Trust's 2011 project Genes, Ancestry and Racial Identity: Does It Matter Where Your Genes Come From?, supported by the Wellcome Trust, sought to debate race and ancestry in the context of genetics and to explore the connection (or lack of connection) between genetics and the concept of 'race'...
3 October 2011 - by Suzanne Elvidge 
The European Commission (EC) is investing €30 million in BLUEPRINT, a project to map the human epigenome - the sum total of the non-coding, but inherited, modifications to DNA...
13 June 2011 - by Antony Starza-Allen 
Are athletes born or built? Basketball star Michael Jordan's son plays college-level basketball and Muhammad Ali's daughter Laila was named Super MiddleWeight women's boxing champion in 2002. Famous footballer Zinedine Zidane's son Enzo, joined by his siblings Luca and Theo, are all promising young footballers among the Real Madrid cadets...
9 May 2011 - by Dr Peter J Aspinall 
The Progress Educational Trust's recent debate 'Is There a Place for Race in Biology' generated lively discussion around whether the accurate identification of genetically-distinct populations is possible or desirable. The semantic issue of whether the term 'race' in this context should be abandoned in favour of 'ethnicity', 'ancestry', or some other term was also raised...
3 May 2011 - by Mehmet Fidanboylu 
Two US studies have demonstrated how whole-genome screening can help improve cancer treatment and diagnosis. The researchers claim to have taken a major step towards using this type of screening to help predict patients' responses to different treatments based on their genetics...
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