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What’s Your Shelf Life?Direct to consumer genetic tests.

Will Synthetic Biology Change How We Value Human Life?

Research in the

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Cesagen Research on Genomics,

Food, Agriculture and Nutrition

Apomixis and the Large

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What’s Your Shelf Life? Apomixis and the Large Genome Collider Research in the Real World

FEATURES

10What’s Your Shelf Life?Are direct to consumer genetic tests a Pandora’s box of medical misinformation? Science journalist, Dave Stevens, finds out.

16Cesagen Research on Genomics, Food, Agriculture and NutritionFlo Ticehurst details Cesagen’s developing portfolio of research in this area.

20Apomixis and the Large Genome ColliderSteve Hughes and Matt Hodges from Egenis explain how the process of asexual plant reproduction is being investigated as a practical tool for crop improvement and food security in developing countries.

26Will Synthetic Biology Change How We Value Human Life?John H Evans asserts that SynBio technologies, and how we define them, could change our sense of self.

28Research in the Real WorldOne Innogen researcher’s experience of a three month placement at the Department for Environment, Food and Rural Affairs.

REGULARS3 RESEARCH NEWS

5 WEB BYTES

6 CENTRE NEWS

14 DIRECTOR’S COMMENT

15 NETWORK NEWS

22 NETWORK EVENTS

24 NETWORK PEOPLE

31 MY WORKING LIFE

Welcome to the spring 2010 issue of the gen. Read on to find out what or who is apomixis (p20), if synthetic biology will change how we value human life (p26) and get an update on Cesagen’s research on genomics, food agriculture and nutrition (p16). Our feature article explores the pitfalls of purchasing your personal genome (p10) and find out how a Network researcher fared working in the ‘real’ world of a government department in Westminster (p28).

As always, we’d like you to tell us what you think. Please send letters, comments or suggestions to info@genomicsnetwork.ac.uk or write to Genomics Network Newsletter, ESRC Genomics Policy and Research Forum, University of Edinburgh, St John’s Land, Holyrood Road, Edinburgh, EH8 8AQ

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researchnewsFacilitating Alternative Agro-food Networks (FAAN): Stakeholder Perspectives on Research Needs The FAAN Project is a co-operative research project funded by the European Community 7th Framework Programme, which aims to engage civil society organisations (CSOs) in ‘co-operative research’ activity and in future research agenda-setting on ‘Alternative Agro-Food Networks’. Within the FAAN Project, five academic institutions and five CSO partners are co-operatively carrying out research, looking at networks involved in alternative forms of sustainable agriculture and rural development in five EU member states (Austria, UK, France, Hungary and Poland). GeneWatch UK and the Open University are the UK team partners, but Lancaster University are also involved in carrying out the research. Cesagen provides funding towards the research of Bronislaw Szerszynski and the Lancaster PhD student Katerina Psarikidou whom he co-supervises with Cesagen’s Larry Busch. Katerina’s PhD forms part of the research she is carrying out for the FAAN project as a researcher with GeneWatch UK. This research contributes to Cesagen’s research theme ‘Bio-knowledge Economies, Publics and Sustainable Innovation’.

For further information please visit: http://www.lancs.ac.uk/fass/sociology/pgrprofiles/199/

Stem Cell Research in ArgentinaInnogen’s Shawn Harmon organised a workshop on ‘Regenerative Medicine: Research Using Human Tissue of Embryonic Origin’, held in Buenos Aires, Argentina in August 2009. Policymakers and academics attended the event and discussed the development of a stem cell, or broader biosciences, research governance scheme in Argentina. Although there is a growing body of social science work relating to the use of human stem cells, there is a dearth of work on the interaction of social values and law in the stem cell research context – with its tensions between promoting science, managing stakeholders and limiting risks – and of its pursuit in developing countries. Shawn’s ESRC-funded project entitled ‘Governing Emerging Technologies (GET): Social Values and Stem Cell Regulation in Argentina’ – is exploring how social and ethical values are, and can be, translated into legal rules.

For additional information about the workshop or the GET project, please visit the website: http://www.law.ed.ac.uk/ahrc/esrcvaluesproject/.

Lay Beliefs about AutismThere is a sharp difference between the beliefs of ordinary people and medical experts about the incidence of autism, Egenis researchers have found. Expert consensus is that the apparent rapid increase in cases of autism is a result of changes in diagnostic practice, but lay people believe the number of cases has increased in absolute terms. And many believe that this increasing incidence is the result of increased exposure to new environmental hazards and other effects of modern lifestyles. Egenis PhD student Ginny Russell looked at unsolicited correspondence to scientists researching the causes of autism. Her paper ‘A qualitative analysis of lay beliefs about the aetiology and prevalence of autistic spectrum disorders’ co-authored with Dr Susan Kelly, also of Egenis, and Professor Jean Golding of the University of Bristol, is available online from the journal Child: care, health and development.

Philosophies of Funding‘Philosophies of Funding’ by Maureen O’Malley (Egenis), Kevin Elliott (South Carolina), Chris Haufe (Chicago) and Richard Burian (Virginia Tech), published in Cell, analyses research guidelines produced by the NSF, NIH and BBSRC. The authors argue that, when it comes to decisions about funding science, philosophical conceptions of good scientific methodology have major implications for research policy. Although many scientists and philosophers contend that science’s pivotal activity is to test hypotheses, O’Malley et al. suggest that accounts of scientific activity should involve not only the proposal and testing of hypotheses, but also the exploration of phenomena, the development of technology and techniques, and the generation of questions that can be addressed with inductive, model-building approaches. ‘An adequate theoretical account of how science works needs to subordinate the generation and testing of hypotheses to a far more inclusive range of practices, and one of the most crucial arenas in which this widening of perspective must occur is in the funding of science,’ they write. More attention to the interplay between activities would improve funding agency guidelines and expectations.

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researchnewsComplexity and Big Science: Psychiatric GeneticsDr Michael Arribas-Ayllon, Dr Andrew Bartlett and Dr Katie Featherstone are currently writing up their ethnography and conducting more interviews as part of their research on psychiatric genetics under Cesagen’s research theme 1: ‘Biomedicine, Identity and Behaviour’.

Their focus on the development of psychiatric genetics as ‘big science’ is showing the changing structure of scientific knowledge production – delaying careers for junior researchers, increasing rationalisation of behaviour, more miniaturisation, more data management and analysis, and more responsibility from senior researchers to create and manage these collaborations.

Their focus on complexity has interesting implications for how the public are included as stakeholders of what is going on in psychiatric genetics. There are issues here about the ethical responsibility of gene testing companies and about the kind of knowledge and responsibility required by the public to make informed decisions about genetic testing and risk awareness.

Further information: http://tinyurl.com/yb5ta3b

The Risk Governance of Synthetic BiologyInnogen’s Heather Lowrie presented a concept note at the International Risk Governance Council (IRGC) workshop on Risk Governance of Synthetic Biology, held in Geneva in October 2009. Effective risk governance is key to enabling innovation in this new area of scientific endeavour as well as to assuring due consideration of relevant risks and benefits of commercial developments. Heather’s concept note provides an overview of the science and innovation potential of synthetic biology and of the benefits it offers and the risks it may pose. The document also seeks to stimulate discussion on the regulation and governance of synthetic biology and appropriate models of public and stakeholder engagement, including how and when to incorporate stakeholder concerns and opinions into decision-making about future developments. The workshop was attended by a select high powered international audience, and this IRGC project is led by Professor Joyce Tait, Innogen Scientific Advisor.

The Risk Governance of Synthetic Biology concept note is available to download from the IRGC website: http://www.irgc.org/IMG/pdf/IRGC_Concept_Note_Synthetic_Biology_191009_FINAL.pdf

Zoos in the 21st Century Professor Steve Yearley, Director of the Genomics Forum, has recently started work on a new project under the EU FP7 entitled ‘EU Zoos and Science in the 21st Century: Engaging the public in nature conservation’. Working with partners in Italy, Jersey, Portugal and Sweden, and involving links with Niabi Zoo in Illinois, the study will examine how EU zoos can contribute to public engagement with issues around biodiversity at the national, EU and global scale.

Professor Yearley asserts, “Most European zoos see themselves as having moved from curiosity and entertainment to scientific conservation and environmental education, but the effectiveness of their contribution to promoting biodiversity is usually not assessed.” Professor Yearley will lead work on the practical public engagement aspects of the project, though he also hopes for some lupine engagement with the celebrated wolf packs of Kolmården Zoo.

The Biology of Identity Dr Steve Sturdy, Deputy Director of the Genomics Forum, recently published an article in The Philosopher’s Magazine on how recent developments in the science of genomics affect how we think about who we are.

“Progress in new identification technologies – most notably for forensic purposes – reinforce the idea that personal identity is rooted in biological individuality”, Dr Sturdy comments, “but personal identity involves more than just that sense of individual uniqueness – it is also heavily bound up with our shared membership of different social groups. As robust new genomic technologies serve to allocate us to particular social categories, especially of race/ethnicity, kinship and health status, it seems the power to determine identity – both individual and collective – is increasingly vested in new genomic applications, and in those sections of society who have access or control over those systems.”

To read the full article, see: http://www.philosophypress.co.uk/?p=910

For more on genomics and the politics of identity, see: http://www.genomicsnetwork.ac.uk/forum/events/pastevents/genomicsandidentitypoliticsworkshopseries/

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Synthetic Biology Game Available to Download

The Genomics Forum has used a small grant from the Scottish Government to develop a synthetic biology version of Democs, a public dialogue tool. So far this resource has met with much enthusiasm – it is currently being trialled with groups across Scotland, and a number of universities have started using the game to teach elements of synthetic biology courses. The game is available to download on our website. For more information, please see: http://www.genomicsnetwork.ac.uk/esrcgenomicsnetwork/news/title,22223,en.html

Innogen Blog Revamped

Visit the redesigned Innogen blog for comments on the latest life science stories: http://innogencentre.blogspot.com/

Recent History of Research on Arabidopsis

Dr Sabina Leonelli (Egenis) was invited to give the closing lecture at the John Innes Centre (JIC) History of Genetics conference in September. This one-day conference was part of the centenary celebrations of the JIC. It explored the history of genetics since 1909, when the JIC started its activities

under the directorship of William Bateson, the biologist who coined the term ‘genetics’. Dr Leonelli spoke to an audience of biologists and historians on the recent history of research on Arabidopsis, which in the UK was largely instigated through the work of the JIC. View her talk online at http://www.jic.ac.uk/centenary/events/historyofgenetics/

Human Provenance Pilot Project: Resource Page

The EGN’s Genomics and Identity Politics workstream has created a webpage on the ‘Human Provenance Pilot Project’ at the UK Border Agency as a resource for all interested parties, in response to the public debate that has taken place about this initiative. The page aims to present a rapidly accessible overview of key available information and discussion on this controversial project. http://tinyurl.com/yhmmw44

E-Newsletter Launch

The EGN has launched a monthly e-newsletter delivering up to date news, research and events information straight to your inbox. If you would like to join our mailing list, please subscribe via the homepage of our website or email: c.demowbray@ed.ac.uk

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Christine Hauskeller, Deputy Director of Egenis, is one of the organisers of a co-operative project centring around a workshop series on the topic of fraud in the biomedical research world.

The workshops aim to investigate the problems – both in their present and historical forms – of fraud and scientific misconduct, and of the issue that scientific results may need a long time to be stabilised and recognised as reliable or acceptable in a particular scientific paradigm. The project organisers, Christine Hauskeller of Egenis, Helga Satzinger of the Wellcome Trust Centre for the History of Medicine at UCL and Kiheung Kim of Imperial College, London, are bringing together working scientists, historians, publishers, representatives from funding institutions and members of the legal and medical professions, and adding perspectives from philosophy and science and technology studies. The December 2009 workshop at UCL included, among other speakers, Frances Rawle, Head of Corporate Governance and Policy at the Medical Research Council and David Cyranoski, Asia-Pacific correspondent for Nature.

Collaborative Project on the Mechanisms of Fraud in Biomedicine

Christine Hauskeller, Deputy Director of Egenis

The Forum’s Human Genre Project (HGP) www.humangenreproject.com (an open-ended online anthology of writing inspired by genetics and genomics) attracts over a thousand visits a month and now hosts over seventy poems and stories by new and established writers.

The Forum is seeking further funding to work with visual artists in creating a travelling exhibition of work inspired by genetics and genomics, and an associated series of events to bring together science practitioners, artists, social scientists, the media and public in conversation. Ken MacLeod, Writer in Residence at the Genomics Forum, who edits the Human Genre Project comments, “Reading many of HGP’s contributions, it is evident that people whose lives are affected by genetic health issues may have a need to explore the emotional and intellectual consequences of these issues in an artistic form. We are hoping to establish a mobile visual arts exhibition of pieces inspired possibly, though not necessarily, by some of the site’s written work and in doing so support imaginative and expressive engagement of the wider public with genetic issues.”

Human Genre Project – Phase II

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Last November, the Human Genome Organisation (HUGO) symposium explored the ethical, societal, and legal issues involving the accessibility of fast, inexpensive, and complete genomic sequencing.

Following this, Cesagen Director and Chair of HUGO’s Ethics Committee, Professor Ruth Chadwick has been asked to chair a working group to produce a HUGO position paper on the impact of next generation genomic sequencing technologies on society and law. The working group will consider the capabilities of the science and the opportunities that could be offered once accessible costs are reached. As these technologies will increase the availability of genomic information that is broad, deep and personally significant, topics will be explored at personal and population levels and are likely to include those relating to privacy, genetic determinism, genetic discrimination, and just use of genetic resources. The paper will discuss policy implications and produce recommendations to contribute to the emerging legal and regulatory landscape surrounding this area of science.

Considering the Future of Whole Genome Sequencing

In association with Café Scientifique, Egenis hosted a series of three highly interactive workshops for members of the public and PhD students, funded by the ESRC and the Department of Business, Innovation and Skills.

The first workshop centred around the questions ‘What is science’ and ‘What is the function of science in modern society?’ The second addressed representations of science on TV and in the media. It began with a showing of a short popular science TV programme, followed by a discussion of how science is presented, both on screen and more widely. At the final session participants considered the parallels between science and religion, and looked at how the scientific research agenda is driven: whether through funding, fashion or discovering the fact.

Science as Politics Workshops

Media Coverage for Mariana Mazzucato

Professor Mariana Mazzucato, Innogen’s Economics Director, has published several opinion pieces on innovation in Pharmaceutical Executive Europe, Excellence in Leadership, The Chartered Institute of Management Accountant and the spring issue of Business XL which has an audience of some 32,000 CEOs/entrepreneurs of fast-growing businesses.

Links to these articles are on the Innogen blog, http://innogencentre.blogspot.com/

Talking to Policymakers Workshop

In December, Cesagen held a workshop for social scientists interested in improving interactions with the policy community. The speakers from the Welsh Assembly Government, the University of Sussex and the Home Office all had experience of working both in academia and in the policy arena, so were able to provide an insider’s perspective of how policymakers use research, how social scientists can communicate with policy makers more effectively and how they can maximise the impact their research can make in policy development.

GCSE Students Discuss Embryo Research

Egenis researchers revisited their very

successful workshop on embryo research

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Exeter. Jean Harrington, Dr Dana Wilson-

Kovacs and Ginny Russell led a group of

45 GCSE students in a discussion about

what research should be allowed and

who should decide what is permissible.

“Our students really enjoyed the session

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The Forum’s Bright Ideas programme provides an exciting opportunity for individuals to spend a period of time – from a few days up to two months – in residence at the Forum.

With comfortable, modern offices on Edinburgh’s Royal Mile, we offer our visitors time and space to undertake a programme of work tailored to their own interests that can also contribute in some way to the Forum’s aims and objectives. The scheme is open to anyone concerned with the social dimensions of genetics, genomics and the new life sciences, whether natural and medical scientists, medical practitioners, social scientists, artists, writers, musicians, or those working in public service, civil society, industry and commerce.

For more information on the scheme, including an application form, please visit: http://www.genomicsnetwork.ac.uk/forum/people

Genomics Forum Launches Bright Ideas Programme

Two EGN members are playing important roles in shaping a new UK Government-funded public dialogue on GM and alternative approaches to sustainable food.

The UK Food Standards Agency is the lead-body responsible, and a Steering Group composed of academics and stakeholders along with associated government body representatives has been appointed to oversee the design and conduct of the process, which will be performed by specialist contractors. Cesagen’s Brian Wynne is deputy chair of the Steering Group, and Innogen’s Joyce Tait a member. Professor Wynne will also chair a sub-group responsible for defining and giving contracts for operationalising the information processes for the public dialogue, including social and economic as well as relevant scientific knowledge. A key aim is to better understand the factors which shape public attitudes towards all the options for improving global and UK food security, and to attempt to develop institutional learning about these factors.

EGN Involved in New UK GM-food Public Dialogue Process

Robin Williams, Ann Bruce, Jane Calvert and Wendy Marsden from Innogen, collaborating with Information Science specialists, have produced a report on the Patterns of Information Use and Exchange in Life Sciences.

The report breaks new ground in understanding the diversity of practices and needs of researchers across the life sciences. It shows that researcher practices diverge from policies promoted by funders and information service providers and that a ‘one-size-fits-all’ information policy cannot be effective. The report was commissioned by the Research Information Network (RIN) and the British Library. Sir Kenneth Calman introduced the launch event (British Library 17th November 2009) which discussed the report’s findings and recommendations report with senior representatives from all sections of the community.

The RIN Report: Patterns of Information Use and Exchange can be found online at: http://www.genomicsnetwork.ac.uk/innogen/publications/policyreports/title,22463,en.html

Managing Data in the Life Sciences

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News BitesEGN at 4 S Annual Meeting Emma Frow (Genomics Forum),

Jane Calvert and Peter Robbins (both Innogen) presented papers on synthetic biology in a lively session at the annual meeting of the Society for the Social Studies of Science in Washington, DC in October 2009.

Environmental Economist Visits Edinburgh

As part of its plant genomics activities, the Genomics Forum hosted environmental economist Mike Christie (Aberystwyth University) as a VRF in early December 2009. The focal point of Mike’s visit was a select workshop that brought together colleagues from Geosciences, the Scottish Agricultural College and the Macaulay Institute to discuss land use management in the context of the emerging bioeconomy.

Social Sessions Success The Genomics Forum ended their

successful series or events discussing science and literature with a poetry performance and public debate on whether science is more inspiring to poetry than prose. A 50-strong audience braved the January snow to hear an internationally acclaimed panel of new and established writers – including Kelley Swain and Ron Butlin – give their readings and thoughts.

Prenatal Tests for Genetic Disorders

A public meeting in Exeter in March organised by Egenis will debate the ethics and implications of new developments that are making possible earlier and easier prenatal tests for genetic disorders. Susan Kelly and Hannah Farrimond from Egenis will discuss the issue with Peter Turnpenny from the Royal Devon and Exeter Hospital and the directors of GeneWatch UK and the charity Antenatal Research and Causes.

The research & development process in biomedical sciences is increasingly costly, unpredictable and inefficient, and will not automatically translate into improvements in health care

Innogen’s research programme has identified radical revision of regulatory systems as the key to freeing up innovation in life sciences. A new policy brief considering the role of two US Food and Drugs Administration initiatives – the Orphan Drug Act and the Fast Track – has been published in Innogen’s Appropriate Governance of the Life sciences series. These specific regulatory programs have delivered benefits across some areas of pharmaceutical innovation, combining industry incentives, more appropriate government intervention, and stakeholder inclusiveness.

Professor Joyce Tait from Innogen, who presented these ideas to November 2009’s Financial Times Global Pharmaceutical and Biotechnology Conference, commented, “Policy makers could usefully build on these ideas to engineer the more systemic and proactive approach to pharmaceutical innovation and regulation needed to create a sustainable and competitive biopharmaceutical industry.”

To download Smarter Regulation of Drug Development: FDA Orphan Products and Fast Track Programmes by Dr Christopher-Paul Milne and Professor Joyce Tait, or other policy briefs in the Appropriate Governance of the Life Sciences series, please visit: http://www.genomicsnetwork.ac.uk/innogen/publications/innogenpolicybriefs/title,20871,en.html

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For some, Direct to Consumer (DTC) genetic tests are a triumph for individual empowerment, providing (relatively) affordable, pro-active healthcare options for the masses. Others fear they are a Pandora’s Box of medical misinformation; waiting to unleash hordes of proto-hypochondriacs onto an unsuspecting and ill-equipped health service. the gen recently spoke to four Genomics Network academics about the pitfalls of purchasing the personal genome.

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Is it worth it?There are currently several companies worldwide offering personal genome scans for less than $1000. After sending off your DNA sample, you will receive in return a host of information (via email) ranging from the medical (your risk of developing various conditions, such as heart disease or Huntington’s) to the so called ‘recreational’ – which covers everything from the mildly interesting (geographical ancestry), to the odd (ear wax type), to the downright obvious (height and eye colour).

For some, this information is as harmless as a horoscope, but many have raised concerns over the potential damage caused by this unregulated global trade. One of the major ones is the provisional nature of the information they provide. The testing companies take research that links small genetic differences (Single Nucleotide Polymorphisms or SNPs) with various medical conditions, and then calculate the risk of developing said disease. And there are a number of problems with the way the DTC companies use this research, says Associate Director of Cesagen, Professor Adam Hedgecoe.

“Previously, when the link between a particular gene and a particular risk was published it was very severely debated in the literature, and it took a long time before that became a clinical test. Now we are talking a matter of days before these results are put in the database, so if you like the time lapse between the production of the result and its availability to the public has shrunk. The data presented is extremely provisional.”

There is, he says, also considerable scientific uncertainty over how such small genomic differences actually contribute to disease risk, and a number of Genome Wide Association Studies (GWAS) have shown that even for characteristics where we know there is a highly inherited component, such as a person’s height, the genetics are very complicated and a large number of SNPs are involved.

“In the next five years, the risk profiles being offered will change out of all recognition because we will have more data from research. The idea that the risk profile somehow represents your risk as a fixed defined feature of your physiology just doesn’t stand up. The tentative, provisional nature of the data is one of the things that isn’t stressed enough by these companies.”

So we don’t fully understand the genetics behind these conditions (and as Alexander Pope once wrote, a little knowledge can be a dangerous thing) but isn’t some risk information better than none? Hedgecoe thinks not.

“Are DTC genetic tests reliable enough to be combined with well-recognised, standardised medical tests? Many biomarker tests such as blood pressure or cholesterol are likely to be mediating much of any effects identified through DNA-based information. To the extent that this is the case, the genetic tests will simply be irrelevant, adding nothing, and in some cases potentially contradicting these more established tests.”

You’ve got mail….A further worry often voiced about these tests is how consumers use the information after they have received it.

Many testing companies operate under what Hedgecoe calls the ‘rational user’ model; that is, the firms assume that people will act rationally in the face of knowledge that they are at risk of developing a life-threatening condition.

“It is simply not the case that people act rationally in the face of genomic risk information,” he says. “Most of the research into this has been done where the information has been provided via counselling sessions,

so we just don’t know how people will react to receiving this information via an email.”

It has been suggested that one such reaction might see consumers stampeding towards their GPs to obtain the counselling that isn’t provided by the DTC suppliers, thereby stretching an already overburdened health service. Dr Steve Sturdy, Deputy Director of the Network’s Genomics Forum, doesn’t think this is a serious concern, though.

“On the one hand, fewer people are likely to even take the test or to worry about the results than has been suggested, and on the other hand, if people do get concerned about their health and go to their doctors that could well be a good thing. There are efforts that have been made in other ways to get people to go to their doctors to speak about their health, so to say that we should be banning this because it will get patients going to see their doctors seems to be quite contradictory to other initiatives.”

Dave Stevens, Freelance Science Writer

It is simply not the case that people act rationally in the face of genomic risk information

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Some have even gone as far as suggesting that the DTC companies pick up the tab for any follow up care. For Sturdy, such a response would only help legitimise such commercial profiling as a provider of valid health information.“I think there is a knee jerk reaction going on that these tests are a bad thing because they are not provided by proper medical providers, and will have all sorts of ill effects for the health service - and this argument hasn’t been thought through.”

One option might be to invest more resources into educating the public about genetic risk factors, but Sturdy suggests a better message would be to explain that “these commercial tests are not able to provide clinically useful information, as either they are insufficiently validated, or the kind of information they provide cannot be acted upon clinically”.

A ‘healthy’ industry?Despite all these concerns, many commentators suggest personalised medicine is the future – but is the sector really all that healthy itself? On the face of it, it certainly seems to be big business. A recent report from PricewaterhouseCoopers estimated the personalised medical care market to be worth in the region of $12 billion in the US – possibly growing to over $100 billion by 2015.

However, the direct-to-consumer diagnostic market is a much smaller part of the boom. The report valued the current global market for genetic testing at the much more modest figure of $730 million, albeit with a predicted 20 percent annual growth rate, driven by ‘consumer demands and declining prices’. That said, one of the companies in the DTC vanguard, deCODE, recently filed for bankruptcy protection in the US, and some reports suggest general disenchantment amongst existing test consumers in the information they received. So is this all just a flash in the pan?

“There is definitely a commercial market for it, in terms of what that market is going to look like will depend on what the regulatory framework eventually is,” says Dr James Mittra, a Research Fellow at Innogen. “I suspect more stringent regulation might be imposed on many of these companies in the future, because there is perceived to be a lot of charlatans on the internet trying to sell all manner of testing services, and there will at some point be a crackdown if the feeling is that these services may do more harm than good.”

Reasons to regulate…Regulation. A word often bandied about with regards to these tests, but like so many things, easier said than done. There are as many people arguing for it as not – but whichever side

of the fence they may sit, it is generally agreed that attempts to regulate a global trade that operates solely via the internet and postal services will be, at best, complicated. Some US states and countries, including Germany, have gone so far as to ban the provision of DTC genetic testing. How such bans can be enforced remains to be seen.

“I don’t think we are at a stage that this should be banned,” says Mittra. “But I do think there need to be clear guidelines developed for how these services are provided. It depends on the type of genetic test. You need to disentangle the really innovative testing services that might play an important part in promoting public health from those that are clearly lacking validity and overselling services to patients worried about their health. You have to identify the real problems before you start going in with stringent regulation. You have to allow commercial innovation.

“Look at the insurance industry. They were potentially interested in using certain genetic tests in trying to make decisions, and ended up with the establishment of the Advisory Committee on Genetic Testing which actually went through all the potential tests they could be interested in and

Up Close and Personal

I think there is a knee jerk reaction going on that these tests are a bad thing because they are not provided by proper medical providers...

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regulated on that basis. I don’t see why that same approach couldn’t be applied to other forms of genetic testing.”Dr Christine Hauskeller, Deputy Director of Egenis, recently put forward another approach, one that takes consumer protection as its primary concern. Her idea focuses on the development of industry standards for product quality, safety, transparency and accountability.

“The industry standard for test production accreditation could be along the lines of existing ISO standards. Currently, commercial genetic testing companies can apply for accreditation of laboratory facilities, but a similar framework does not exist for other elements of their products.

“Given the threats to legally protected individual rights, protection of children and discrimination that may arise from unregulated practices, we suggest the introduction of a certification procedure and the creation of a global committee that licenses genetic tests for sale to consumers.”

This would structure the market between certified and non-certified tests, she adds, allowing consumers to choose tests that follow specific legal requirements, assure appropriate consent and safety of personal information.

It is certainly an intriguing idea, and one that achieves many of the goals of regulation. It could potentially be carried out via existing accreditation networks and some of the key areas of concern with DTC genetic tests at the moment, such as validity of the information and communication of risk, could then be addressed by assembling independent panels of experts to set standards. The system would also allow certain tests results to ‘trigger’ counselling requirements, and it would also shift the obligation onto the companies to ensure the DNA sample comes from the consumer.

Certainly, things seem to be coming to a head, with growing calls for ‘regulation’ of a market all set to boom in the US. Here in the UK, both the Nuffield Council on Bioethics and the Human Genetic Commission recently ran consultations on DTC genetic tests, with their reports due later this year. 2010 will likely be a landmark year for DTC genetics.

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The famous book New Production of Knowledge by Michael Gibbons and colleagues, published in 1994, argued that the relationship between science and society had changed. New knowledge was being generated ‘in the context of application’, eroding the boundary between science and society. The stream of scientific information to wider society was replaced with interaction as people responded to developments in science with ‘urgency and conviction’.

These arguments were rapidly adopted by policy makers who aimed to link science with innovation and to understand the relationship between science, technology and social change. The arguments also influenced researchers trying to improve their techniques for researching ‘real-world’ problems. These problems, the authors claimed, required new types of science: they could not be solved from established academic disciplines alone. They required interdisciplinary, even transdisciplinary, techniques and theories. These new approaches needed to involve social sciences as well as natural, medical and technological sciences.

The ESRC Genomics Network (EGN) was created to ‘examine the development and use of the science and technologies of genomics’, a goal that involves working with natural, medical and technological scientists and policy audiences related to genomics.

Our success requires three things.

First, we must be ‘world-class’ in our social science disciplines. For Innogen, these include sociology, economics, development studies, business, law and public health. The other EGN centres have complementary ‘world-class’ expertise.

Second, we must build a range of interdisciplinary skills that enable us to understand the complex nature of genomics and the life sciences and their actual and potential applications. In Innogen, an example of this is our work on

systems and synthetic biology, emerging disciplines where social sciences contribute to their growth.

Third, we must be able to research the ‘real worlds’ of policy and industry, as well as of science, technology and innovation.

These are not easy tasks. Leaving the ‘worlds’ of our academic disciplines can cause a clash of ideas about how things should be done, which methodologies should be used, how terms should be defined. Creating effective interdisciplinary teams is difficult, but an area where the EGN is making great progress.

Increasing the impact of our research outside of academia is also challenging. In an environment of ‘evidence-based policy’, what constitutes evidence? From the perspective of a government policymaker, or industry manager, how can they use our research findings? These different perspectives or world views can be a culture shock as we strive to find ways to work together to solve problems.

Ann Bruce, an EGN researcher swapped Innogen for Westminster for three months. The article (p28) describes her as moving worlds – from the familiarity of Innogen and the University of Edinburgh to the world she was asked to study, of farmers, vets and food-chain professionals, but also the world of a government department. Culture shock yes, but an exhilarating experience none the less.

We hope the gen newsletter gives a sense of how exciting ‘our world’ is, as we grapple with our understanding of these other ‘real worlds’.

Professor David Wield, Director, ESRC Innogen Centre

Director’s CommentsResearch in ‘Real’ Worlds

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Why Shouldn’t Parents Have Perfect Babies?Genomics Network researchers joined some of Scotland’s leading science, medical, political and bioethics experts to discuss the subject of eugenics at Eugenics: Science Fiction or Future Reality? the Edinburgh Filmhouse’s annual biomedical film festival in November 2009. Cult film classics GATTACA (1997) starring Uma Thurman and Ethan Hawke and the challenging Swedish documentary Homo Sapien 1900 (1998) by Peter Cohen formed the backdrop to lively public debates including to what extent we’re already engineering the perfect human race and why shouldn’t parents have perfect babies?

For further information on the event, see: http://www.schb.org.uk/events.htm#filmfestival

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EGN Involvement on Report on DNA DatabasesAt the end of 2009, the Human Genetics Commission (HGC) published an important report - Nothing to Fear, Nothing to Hide - on the governance and use of the UK’s National DNA Database.

The HGC report follows an award-winning Citizens’ Inquiry – co managed by the EGN’s Genomics Forum – into the forensic use of DNA and the National DNA Database and a wider consultation to which the EGN – particularly Cesagen’s Dr Ruth McNally – took an active part. Professor Steve Yearley, Director of the Genomics Forum, said, “We are naturally very pleased to see the EGN’s contributions recognised in the report and its recommendations. This is an excellent example of how the social sciences, through well-planned, well-researched public engagement and policy engagement activities, can inform policymaking. The National DNA Database is a crucial area in which the public’s need for both privacy, and effective policing, must be balanced. We are delighted to have been involved in this very important project.”

For further information see:http://tinyurl.com/yzyufo3

http://tinyurl.com/yhqg5ny

http://tinyurl.com/yjl9lcb

Nature Article

Nature, the acclaimed international weekly journal of science recently published an article examining the contribution social science is making to developments in genomics and the life sciences, and evaluating the ESRC Genomics Network’s work in this area. Nature concludes that the EGN’s activities, “suggest coherent, multidisciplinary centres can help social scientists get a firmer grip on complex science, cultures and behaviours underlying new technologies.”

To read the full article, see: http://www.nature.com/news/2009/091216/full/ 462840a.html

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Flo Ticehurst, Communications Officer, Cesagen

Cesagen is developing a portfolio of research related to food and agriculture, contributing to policy development and the work of regulatory organisations and engaging with other major networks of researchers and professionals. Here Cesagen’s Communications Officer, Flo Ticehurst, summarises the centre’s work in this area.

Genomics, food and agriculture is a particular focus of Cesagen’s research theme 2: ‘Therapies and Enhancements’. However, research and other activities, including public and

policy engagement, on these and related topics are also undertaken under the other themes, particularly theme 3: ‘Bio-knowledge Economies, Publics and Sustainable Innovation’.

A cross thematic approach enhances the development of Cesagen’s expertise and contribution to conceptualising the issues arising with the application of genomic science in food and agriculture.

Cesagen Research on Genomics, Food, Agriculture and Nutrition.

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Leads Cesagen’s research theme 2:

‘Therapies and Enhancements’, and is

Principal Investigator on Cesagen’s work on

nutrigenomics. She is a member of the Food

Ethics Council and has served as a member

of other policy-making and advisory bodies,

including the Panel of Eminent Ethical Experts

of the Food and Agriculture Organisation

of the United Nations, and the UK Advisory

Committee on Novel Foods and Processes.

Professor Ruth Chadwick

Professor Brian Wynne

Leads research theme 3: ‘Bio-knowledge Economies, Publics, and Sustainable Innovation’. Brian has written extensively on GM foods and other aspects of agricultural and plant genomics. He has been appointed to the Food Standard Agency (FSA)’s Advisory Panel for the forthcoming consumer engagement work on GM. The FSA is leading a consumer dialogue project to explore understandings of GM and the associated risks and benefits to help inform future discussions in this area.

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Dr Richard Twine

His research focuses on animals,

biotechnology and sustainability,

posthumanism and the political economy of

animal biotechnology. He is also developing

conceptual work around discourses of

posthumanism for theme 2: ‘Therapies

and Enhancements’, but which also comes

under the ‘alternatives’ element of theme

3’s ‘Globalisation, Sustainable Innovation

and Alternatives’ sub-theme. He is currently

deepening his research around the political

economy of livestock genetics companies

pertaining to their transnational operation, IP

portfolio and uptake of molecular techniques.

His research focuses on various aspects of standards, their formation, implementation, and consequences for the agri-food sector. This includes genomics, economics (and economies) nanotechnologies, security technologies and related sociotechnical networks. His research interests are linked to the ethical as well as social aspects of standards.

Professor Larry Busch

Studies the relationship of food and food

cultures. He is currently developing this

theme by investigating the relationships

of genomic promises, food security and

cultural change. He is also investigating

the influence of digital technologies in

transforming indigenous people’s capacity

to attain sustainable development goals

and the fulfilment of human rights as

peoples and as citizens.

Dr Oscar Forero

Professor Busch and Dr Forero are organizing a Workshop on ‘The Future of the Codex Alimentarius’ at Lancaster University, on 16 March 2010, as part of the ESRC’s Festival of Social Science. The debate will interest those concerned with food security policies and the role of the Codex in ensuring food safety globally. Further details: http://tinyurl.com/yar95f3

Dr Jane Taylor

Is a plant biologist based in the Lancaster Environment Centre (LEC) at Lancaster University investigating the molecular mechanisms that underpin pest resistance in plants. Recent research with LEC colleagues has led to the filing of a patent (WO 2008/007100 A2) for a novel mechanism of plant protection. Within Cesagen she is associated with theme 3, contextualising discussions around speed and commodification from the perspective of a practising bioscientist.

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Is working on the ‘Nutrigenomics’ project under theme 2: ‘Therapies and Enhancements’ and linking with theme 1: ‘Biomedicine, Identity and Behaviour’. The project focuses on emerging ethical, legal and governance issues associated with developments in nutritional sciences and genomics, research questions include:

• What are the concerns emerging with molecular genetic testing for personalised diet with regards to food choice, commercialisation and health?

• What are the prospects for improving public health concerns arising due to diet and lifestyle, such as obesity and cardiovascular diseases, with nutrigenomics?

• How will nutrigenomics implicate the dietary advice and role of the professionals such as dieticians, nutritionists and GPs.

Dr Mina Bhardwaj

Leads theme 2’s subtheme ‘Stem cells and

Regenerative Medicine’. Neil is focusing

upon the development of In Vitro Meat, the

application of stem cell technologies and

the laboratory based production of muscle

tissue for human consumption.

He is interested in (1) the co-production of the

tissue and the promissory realm promoting

it, and (2) issues around the reformulation of

a technique developed in biomedical settings

as appropriate for agricultural settings and the

impact this has upon regulation, prestige and

knowledge flow.

Dr Neil Stephens

Are involved in the EU Project FAAN

– Facilitating Alternative Agro-food

Networks(AAFNs): Stakeholder Perspectives

on Research Needs. The project contributes

to theme 3, especially regarding alternative

socio-technical imaginaries and sustainable

innovation, research questions include:

• how AAFNs are defined by social,

political, commercial and cultural

frameworks involving motives beyond

direct material interests in practice,

• the alternative character of the AAFNs

with regard to the diverse aims, social

relations, knowledges and skills

embedded in them,

• how current policies facilitate or impede

the development of AAFNs.

For further details visit: www.faanweb.eu

Dr Bron Szerszynski & Katerina Psarikidou

Co-leads theme 3 subtheme: ‘Value,

Speed, Commodification and Knowledge’,

and is developing a theoretical repertoire

and set of key concepts for this sub-theme,

working towards a political economy of

bioeconomic promise, innovation and

value. Larry maintains an empirical focus

on agricultural biotechnology, following

developments in the technologies and the

debates and contestations around them.

Dr Larry Reynolds

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The ESRC Genomics Network Conference 2009 Hosted by Cesagen at Cardiff’s prestigious City Hall, and organised

around the theme: Mapping the Genomic Era: Measurements and Meanings.

Over the course of three days delegates were treated to an array of workshops, a policy engagement plenary session and five parallel sessions showcasing up-to-the-minute research. The conference provided an indispensable opportunity for old colleagues to catch up, new colleagues to network and future collaborations to emerge.

Keynote contributions came from:• Professor Joan Fujimura (University of

Wisconsin-Madison) who opened the conference with a paper discussing ‘Genome Geography: Mapping and Measuring Differences in Biomedical Genomics’

• Professor Douglas Turnbull (Newcastle University) who gave a fascinating account of ‘Mitochondrial Genetics – Inheritance and Disease’

• Dr Paul Martin (University of Nottingham) who offered a compelling vision of ‘Personalised Medicine, Genomics and the Future of Healthcare’

• Nobel Laureate, Professor Sir Martin Evans (Cardiff University) who asked ‘Stem Cells – Why is there a Problem?’ and

• Professor Huanming Yang (Beijing Genomics Institute), who spoke about ‘The Genomic Era and the Future of Man’

The policy engagement plenary session was organised in collaboration with the Society for Genomics Policy and Population Health. This session provided a unique opportunity for delegates to engage in dialogue with experts involved in public health implications of genomic medicine for common complex diseases.

Parallel sessions were fairly eclectic and wide-ranging in scope covering themes from ‘Political economy of genomic and biotechnological promise’, and ‘Changing modes of communication? The negotiation of meanings at the science-media interface’ to ‘Psychiatry and genomics’. All of these were very well attended and generated lively discussion.

A full report of the conference is available on the ESRC Genomics Network website: http://www.genomicsnetwork.ac.uk/cesagen

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The term Apomixis (apo – without; mixis – mixing) refers to a set of common and natural forms of asexual plant reproduction in which the maternal genome is conserved from generation to generation via seed. Theoretically the apomictic mechanism has practical potential for stabilising or fixing variation in plant varieties, in particular those produced via hybridisation. However, though common as a natural reproductive strategy among some plant groups, it is an uncommon phenomenon among crop species, so there has been little opportunity to test theory.

Since the early 1950s scientists have worked to harness apomixis as a practical tool of plant breeding, and enthusiasm for the proposition has waxed and waned as new scientific discoveries have been made and as new technical hurdles have emerged. Marking a resurgence of interest, in the Bellagio Declaration of 1998 a group of 22 senior scientists and breeders, funded by the Rockefeller Foundation to debate strategy for the development of apomictic breeding, collectively expressed their strong enthusiasm for the principle and for a concerted research effort. Since then the research climate for apomixis has flourished spasmodically between privately and publicly funded initiatives, but has yet to deliver a practical breeding tool of broad applicability for either sector.

It is increasingly recognised that the formation of hybrids between different species (wide hybrids) has played a significant role in evolution and speciation in the plant kingdom. It appears that the collision of genomes following a hybridisation event offers an environment in which diverse genomic combinations can be elaborated under the gaze of natural selection, optimising genetic diversity and the emergence of new species. This is further enhanced where

wide hybrids are fixed by an apomictic reproductive strategy, in which genomic and allelic combinations which would not survive future sexual exchange are stabilised and can constitute novel plant varieties. Such wide hybrids, embodying high levels of internal genetic diversity, should in theory exhibit broad adaptability. In agricultural terms, broad adaptability in terms of tolerance to environmental stress should provide benefits to both intensively and lightly managed agronomy, though extraordinary yield may only be achievable under intensive management and fertiliser inputs. Broad adaptability also bodes well for the challenges of environmental change which lie ahead.

The classic deployment of hybrids in plant breeding has been in F1 varieties, for which the exemplar is maize. Radical changes in agricultural practice and the breeding industry resulted from the adoption of this technology in the USA in the 1930s. The technology depends on inbred parental lines and produces hybrid varieties which undergo segregation in subsequent generations, meaning that seed has to be purchased afresh for each planting. Nevertheless, gains in productivity were sufficient for farmers to adopt F1 hybrids. Plant breeding became increasingly industrialised and detached from farming practices, while farmers became the consumers of seeds and related products developed for the market. It was an important landmark on the path to modern intensive agriculture.

By contrast, apomixis produces stable hybrids without the need for inbred parental lines. In technological terms, it is viewed as a more ‘farmer-friendly’ technology, embodying greater scope for inbuilt diversity and innovation. For example, advocates argue that hybrids stabilised by apomixis (including F1 hybrids) would be beneficial for resource-poor farmers, who would be able to maintain and propagate their own

Professor Steve Hughes, Co-Director, Egenis

Apomixis and The Large Genome Collider

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Dr Matt Hodges, Research Fellow, Egenis

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seed and work with a greater range of candidate varieties developed, ultimately, by themselves.

Within the scientific and plant breeding communities, then, apomixis is seen as an emergent opportunity to facilitate the deployment of biological diversity into a more widely adaptable crop base, and, in the short term at least, as a complex and demanding technical and scientific goal. Egenis’ studies have been exploring how researchers are pursuing this goal on a number of fronts.

1 The introgression of an apomictic trait from non-cultivated relatives of crop species into the breeding lines used in varietal development constituted a favoured route during the 1990s. However, although the principle of the transfer and acquisition has been demonstrated, the reconstitution of robust varieties fixed by apomixis has been slow in coming. It is possible that apomictic varieties of pearl millet and cassava may not be far off.

2 Reverse and de novo engineering of an apomictic trait is an approach favoured by plant molecular biologists. This requires in-depth understanding of the molecular components and interactions of plant reproduction which enable apomictic behaviour. The Egenis project has included detailed anthropological study of a public-private partnership involving leading private-sector breeding companies, CIMMYT, and the French research institute, IRD, which has engaged all of these approaches with the goal of developing apomictic maize. The study provides fascinating insight into the tensions between molecular and breeding approaches, and public- and private-sector goals and priorities, with wider implications for frontier research and innovation in ag-biotech.

3 Breeding with crops in which apomixis is a part of the reproductive strategy is already in progress. Its impact is partly limited by the restricted number of apomictic species of use to agriculture; and is practically dependent upon the occurrence of a sexual variant. This provides a bridge with which to bring diverse apomictic accessions together in a hybrid. Such hybrids may either be fixed directly by the selection of apomictic segregants and so become new wide hybrid varieties, or else they may be crossed to further accessions in order to build up great genomic diversity before being fixed. This was the approach used in the production of novel hybrid cultivars of the tropical forage-grass Brachiaria.

A pair of novel apomictic hybrid cultivars of Brachiaria have been commercially released and have passed into widespread cultivation as preferred planting material in Central and South America and South-East Asia. The cultivars combine resistance to insect predation with drought tolerance, high dry matter productivity and good nutritional content relative to established Brachiaria cultivars derived directly from wild accessions. The secret has been the landmark construction by breeding teams at CIAT in Colombia and EMBRAPA in Brazil of hybrids which are stabilised by the apomictic reproductive mechanism normally active in this grass. The achievement arguably confirms long-standing enthusiasm for apomixis as a valuable component tool of crop improvement and food security, and is significant for policy and strategy for agricultural production in diverse rangeland and pasture systems. It is also relevant to issues of research design, resource commitment, and prioritisation regarding the future development of apomictic breeding methods for other crop plants. Egenis research suggests that apomixis is emerging as a valuable arena for social scientific study of the dynamics of frontier research and technological innovation in ag-biotech, at a time when such issues are of increasing importance to debates on food security and climate change.

Top: The CIMMYT station at El Batán, Mexico. Nathan Leamy (2007). Above: Tripsacum dactyloides (Gama grass), an apomictic relative of maize and donor for wide hybridisation experiments. Jerry Friedman (2006).

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March

Workshop: 8 – 9 March 2010User and User-Driven Innovation:Status, Prospects and ImplicationsVenue: Open University, Milton KeynesOrganised by: InnogenContact: j.t.mugwagwa@open.ac.uk

Workshop: 12 March 2010Genomics, Medicine and the HumanitiesSpeakers: Professor Jay Clayton and Professor Ellen Wright ClaytonVenue: Byrne House, University of ExeterTime: 1.30pm – 5.00pmOrganised by: Egenis and the Exeter Interdisciplinary Institute

Public meeting: 16 March 2010Non-invasive Prenatal Genetic Testing – a Moral Maze?Venue: Exeter Central LibraryTime: 7.00pmOrganised by: EgenisContact: c.h.packman@exeter.ac.uk

Seminar: 16 March 2010Biomedicine and Decision Making “In Vitro” and “In Vivo”: From Mathematics to EthicsSpeaker: Prof Giovanni Boniolo, (University of Milan)Venue: Byrne House, University of ExeterOrganised by: Egenis

Public Event: 16 March 2010The Future of the Codex AlimentariusSpeakers: Dr Robert Verkerk, Director of Alliance for Natural Health and Ezzaddine Boutrif, Chief of Food Quality and Standards Service, Food and Nutrition Division, Food and Agriculture Organisation (FAO)Venue: Institute for Advanced Studies (IAS) building, Lancaster UniversityOrganised by: CesagenContact: o.forero@lancaster.ac.uk

Public workshop: 17 March 2010Models as Active SpacesVenue: Studio One, Plymouth Arts CentreTime: 2.00pm – 7.00pmOrganised by: EgenisContact: c.h.packman@exeter.ac.uk

Seminar: 23 March 2010Speaker: Dr Alison Kraft (University of Nottingham)Venue: Byrne House, University of ExeterOrganised by: Egenis

Debate: 23 March 2010Delivering Innovation in HealthcareSpeakers: Professor John Coggins (Vice Principal Life Sciences, University of Glasgow); Graeme Boyle (Director, Nexxus) and Professor Sir John Savill OBE (Chief Scientist, Health and Community Care, NHS Scotland), Professor Steve Yearley (Director, Genomics Forum)Venue: Dynamic Earth, EdinburghOrganised in association with Genomics Forum

Seminar: 30 March 2010Speaker: Prof Steve Fuller, (University of Warwick)Venue: Hatherly Labs, University of ExeterOrganised by: Dept of Sociology & Egenis

April

Seminar: 13 April 2010Transgenics and the Carcinogenic Risk Assessment of PharmaceuticalsSpeaker: Professor John Abraham, Centre for Research in Health and Medicine (CRHaM), University of SussexVenue: Cardiff UniversityOrganised by: CesagenContact: arribas-ayllonm@cf.ac.uk

Open lecture: 15 April 2010Data-Driven Science: Why and HowSpeaker: Professor Douglas Kell and Professor Tony HeyVenue: Lecture Hall, Streatham Court C, University of ExeterTime: 10.00amOrganised by: Egenis

Workshop: 16 April 2010Brain Donation: What Happens to Your Brain After You Die?Speakers: Prof James Ironside, Director of the MRC UK Brain Banks Network and othersVenue: Royal College of Surgeons of Edinburgh, Playfair Hall, Nicolson Street, EdinburghTime: 1.30pm – 4.30pmOrganised by: Gengage (The Scottish Healthcare Genetics Public Engagement Network) and the Genomics Forum

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Public Lecture: 22 April 2010Sustainable Diets: Too Complex, Too Nanny-state – or Inevitable?Speaker: Tim Lang, Professor of Food Policy, City University, LondonVenue: The Banqueting Suite, Lancaster Town Hall, LancasterTime: 6.30pm, followed by a reception with locally sourced produce Organised by: CesagenContact: K.Calvert2@lancs.ac.uk.

Workshop: 22-23 April 2010Genomic Subpopulations and Health Systems ResponsesThis workshop is part of the ESRC Genomics Network’s ‘Health Technologies and Health Systems’ WorkstreamVenue: Exeter University Organised by: Egenis and Genomics Forum Contact: s.e.kelly@exeter.ac.uk

MaySeminar: 4 May 2010Speaker: Dr Thomas Pradeu, (Sorbonne University, Paris)Venue: Byrne House, University of ExeterOrganised by: Egenis

Seminar: 5 May 2010Societal Adaptations to Climate ChangeVenue: Genomics Forum, University of EdinburghOrganised by: Genomics Forum for the Edinburgh Consortium on Rural Research and SNIFFER

Seminar: 11 May 2010Pharmaceuticals, Culture, and ControlSpeaker: Dr Scott Vrecko, (London School of Economics)Venue: Byrne House, University of ExeterOrganised by: Egenis

Conference: 18 - 21 May 2010HUGO Human Genome Meeting 2010 Venue: Montpellier, FranceThis meeting is designed to update and increase knowledge in the ever-evolving field of human genome research.Further details: http://www.hgm2010.org

Seminar: 18 May 2010Justifying Clinical Ethics: Bridging the Gap Between Evaluation and AdvocacySpeaker: Prof Leah McClimans, (University of South Carolina)Venue: Byrne House, University of ExeterOrganised by: Egenis

Seminar: 25 May 2010Speaker: Dr Erich Griessler (University of Vienna)Venue: Byrne House, University of ExeterOrganised by: Egenis

June

Seminar: 8 June 2010Speaker: Prof Bernardino Fantini (University of Geneva)Venue: Byrne House, University of ExeterOrganised by: Egenis & Centre for Medical History

Conference: 14 - 16 June 2010Is Medical Ethics Really in the Best Interest of the Patient?Venue: Uppsala Concert and Congress Hall, SwedenFurther details: http://medical-ethics2010.crb.uu.se Organised by: Centre for Research Ethics & Bioethics at Uppsala University and Cesagen.

July

Conference: 28 - 31 July 201010th World Congress of BioethicsVenue: SingaporeThis Congress is held under the Auspices of the International Association of BioethicsFurther details: http://www.bioethics-singapore.org/wcb2010

AugustPublic events x 3: August 2010Edinburgh International Book FestivalVenue: Charlotte Square, EdinburghOrganised by: Genomics ForumContact: emma.capewell@ed.ac.uk

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Forum Hosts Honorary Writers in ResidenceThe Genomics Forum is delighted to announce that Ken MacLeod and Pippa Goldschmidt will continue to work with us as honorary writers in residence for the next few months. Currently involved in developing the Human Genre Project into a visual arts exhibition, Ken and Pippa now plan to host further social science workshops for writers and scientists, and reprise the Forum’s genomics short story competition for 2010. More information about Ken and Pippa’s work is available at www.genomicsnetwork.ac.uk/forum

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Public-Private Partnerships in Agricultural Research Egenis Research Fellow Dr Matt Hodges presented a case study on the Apomixis Consortium to the Consultative Group for International Agricultural Research (CGIAR) workshop on public-private partnerships, which aimed to draw up recommendations and guidelines for CGIAR’s engagement with the private sector. Apomixis is a form of asexual reproduction through seeds. Theoretically, it could provide the basis of a ‘cloning’ technology, reducing costs for the seed industry, while enabling resource-poor farmers to save hybrid seed and fix cultivars (varieties of cultivated plants developed by breeding) for niche microclimates.“This was potentially a landmark in the CGIAR’s engagement with the private sector,” Dr Hodges said. “It was an excellent opportunity for Egenis to demonstrate the value of an anthropological perspective. What emerged was the need for sustained investment in frontier research into new agricultural technologies, if the very complex challenges associated with global food security and climate change are to be addressed. At present, short-term funding agendas can seriously restrict such efforts.”

Recommendations, case studies and presentations from the workshop are available at:http://www.cgiar.org/psc/

Parliament and Prizes

Dr Julius Mugwagwa, an Innogen Research Fellow, was invited to speak at a seminar in the Houses of Parliament on 3 November 2009. The seminar explored the importance of science to African parliaments, the role of the parliament and challenges and opportunities for engagement with science and technology. Julius and co-author Dr Susan Kilonzo (Maseno University, Kenya) won an award for ‘Best Paper’ at the Development Studies Association Annual Conference held 2-4 September 2009, University of Ulster, Northern Ireland. The prize was awarded by the Journal of International Development and the winning paper, entitled ‘Societal Beliefs, Scientific Technologies and HIV/AIDS in Africa: Facing the Challenge of Integrating Local Communities in Kenya and Zimbabwe’, is available as a working paper on the Innogen website.

Talking Technology Dr Sabina Leonelli (Egenis) was invited to speak at the IEEE e-Science conference in Oxford in December. The e-Science 2009 conference brought together leading international and interdisciplinary research communities, developers, and users of e-science applications and enabling IT technologies. Dr Leonelli gave a talk during the workshop session ‘Web semantics in action’. Semantic web applications are currently being developed to support many key aspects of scientific research, from experimental data management, discovery and retrieval, to analytic workflows, hypothesis development and testing, to research publishing and dissemination. Dr Leonelli’s contribution explored insights from the history, philosophy and social studies of biology that may help the development of web semantics in the biomedical sciences, focusing particularly on the tools intended to represent biological knowledge and experimental practices of relevance to clinical research (such as bio-ontologies).

A detailed description of the workshop can be found at: http://www.oerc.ox.ac.uk/ieee/workshops/web-semantics-in-action-web-3.0-in-e-science.

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In addition to her role as Innogen Deputy Director, Dr Catherine Lyall, has been appointed as chair of the Scottish Funding Council (SFC)’s Knowledge into Public Policy Action Group. Catherine has also been appointed as Director of Knowledge Exchange in the School of Social and Political Science.

Congratulations to Sîan Beynon-Jones, Ann Kingiri and Tamar Shengelia who all passed their PhD vivas this month bringing the total number of completed PhDs at Innogen to 16. Sîan left Innogen in October to begin an eighteen month research fellowship with Nik Brown at SATSU, University of York. Sîan is working on an EU funded (FP7) project which is addressing the impact of citizen participation on policy-making concerning xenotransplantation.

EgenisIn December Egenis said goodbye to Centre Secretary Saira Kidangan, who had been with us for three years but is now going back to India. Saira is expecting her first baby in March, but she isn’t the only productive person at Egenis. Kate Getliffe and her husband Will welcomed baby Lilian in November, while Marco Liverani and his partner Alex had their first child, Michaela, in September.

In January Dr Mathias Grote began a one-year fellowship in Egenis which is part of a two-year collaborative project with the Max Planck Institute in Berlin. Egenis welcomed a new PhD student, Ann-Sophie Barwich and also a visiting PhD student from Vienna, Anna Szyma, who will be at the Centre until May. Intern Jessica Slattery will be working with Professor Steve Hughes until late March. Congratulations are due to Richard Holdsworth, who was awarded his doctorate in December.

ForumAs the Forum wave good-bye to Claire Alexander, we welcome back Claire de Mowbray from maternity leave as our web and events officer. Dr Kathyryn Hunter will join us as the new Administrator for Gengage.

New Policy Posts for Joyce Tait Professor Joyce Tait, Innogen’s Scientific Advisor, has been asked to chair the Nuffield Council on Bioethics Working Party on “New Approaches to Biofuels”. Innogen Co-Director Prof Joanna Chataway is a member of the working group which has gained press coverage by the Guardian and BBC.Joyce has also been asked to join the Food Standards Agency GM Dialogue Steering Group, and also the linked working group to advise on the content of the dialogue. Joyce recently contributed to The Royal Society Report on New Approaches to Biological Risk Assessment, The Royal Society of Edinburgh Report on ‘Business R&D in Scotland: a missing link’ and provided a case study on GM Crops for the IRGC report on Risk Governance Deficits.

Larry Busch Cesagen’s Larry Busch Professor of Standards and Society, will be a keynote speaker at the Innovation and Sustainable Development in Agriculture and Food Conference in Montpellier, France (28 June – 1 July). He will also be making a keynote address at the European Food Law Association annual meeting in Amsterdam (15-17 September).

Staff movesInnogenProfessor Joanna Chataway began a part time post with RAND Europe as Director of Innovation Policy in January 2010. RAND Europe is a research and policy organisation based in Cambridge. Joanna will combine her new post with her role as Innogen Co-Director at the OU. Dr Peter Robbins remains as OU Deputy Director with new posts of Director of Economics and Director of Health Innovation being filled by Professor Mariana Mazzucato and Dr Rebecca Hanlin respectively.

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Forum Director Steve Yearley has been made a Fellow of the Royal Society of Edinburgh, Scotland’s national academy of science and letters, on account of his interdisciplinary research and his innovative public engagement

work. Each new fellow is elected by a rigorous four-stage selection process and must be recognised within their peer group as having achieved excellence in their work. This award will raise still further the Forum’s already high profile as a centre for cross-disciplinary knowledge exchange.

Synthetic biology is, at its most general, the attempt to create new forms of life purely from design. One approach is to create a ‘minimal bacterial genome’ that has the absolute minimal number of genes required for continued existence. On this ‘chassis’ would be attached artificially produced genomic ‘cassettes’ that would create an organism with desired properties, such as producing pharmaceutical components or combining sunlight and water to make hydrogen for use as fuel.

Defining life in terms of DNA?Ethicists have raised serious questions about the moral principles, value and regulation of creating new life forms that could escape, engage in uncontrolled self-replication and damage the environment or fall prey to terrorists or ‘biodesigner-hackers’. Scholars are raising concerns of a more fundamental nature, suggesting that this technological ability will change human self-conception, and lead to us to value human life less. For example, in one of the first ethical reports on synthetic biology a group of bioethicists wondered about the ‘ultimate implications of defining life in terms of DNA?’ They worried that the ‘synthesis of minimal genomes will be . . . perceived by the public as proving that life is reducible to or nothing more than DNA.’ This may ‘threaten the view that life is special’ (Science Vol. 286, p.2087-90). Other ethicists worry that the vocabulary of synthetic biology ‘identifies organisms with artifacts, an identification that, given the connection between ‘life’ and ‘value,’ may in the (very) long run lead to a weakening of society’s respect for higher forms of life that are usually regarded as worthy of protection.’ (Nature Biotechnology Vol. 26, p. 388). More specifically, the claim here is that synthetic biology teaches us that bacterial ‘life’ is DNA that can be manipulated, and therefore human ‘life’ is DNA that can be manipulated. Conceiving of ourselves in this new way, we would then, ever so slightly, begin to treat each other like we treat bacteria and objects that we manipulate.

These are precisely the sorts of claims that scientists, analytic philosophers and, at least, American bioethicists tend to hate. Inherently vague, difficult to demonstrate, and based on values for which there is no consensus, these concerns are often mentioned in conjunction with technological developments and always ignored. I think, however, they are among the most important questions in the human relationship with technology, and this importance is indicated by the recurrence of this type of claim throughout history. For example, the Copernican revolution purportedly changed how humans viewed themselves in relation to nature, and many social scientists claim that human genetic science more generally teaches us that we are ultimately nothing more than DNA, or a compilation of genes, instead of something more sacred. And, of course, humans have changed our self-perception by making analogies to animals and plants before

– the eugenics movement took lessons about survival of the fittest originally learned from plants and animals and created a view of humans where some types of people are more valuable than others.

To fight against changing human self-perception, we must then have a clear idea of how this transformation occurs, and it occurs by making analogies across categories. In this case the category analogy would have to be between microbes and humans – that the ‘life’ of microbes is analogous to the ‘life’

Professor John Evans, Visiting Research Fellow, Genomics Forum

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Will Synthetic Biology Change How We Value Human Life?

Just because bacterial life is simply DNA, it does not mean that human life is just DNA.

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of humans. This sort of ‘category mistake’ spreads through the lazy use of metaphor, when no one stops to proclaim ‘but microbes are not humans.’ We therefore do not necessarily need to oppose synthetic biology out of fears that this analogy will be made, as long as someone explicitly and repeatedly states that ‘just because bacterial life is simply DNA, it does not mean that human life is just DNA.’ If science teaches us something about ourselves, an alternative lesson plan can also be developed to counteract the (false) scientific one we do not want people to learn.

Transforming how we think of ourselvesI believe it should not be too difficult to convince humans to reject analogies between bacteria and humans and that people are already primed to do so. Anthropologists have shown that most societies create cognitive distinctions between humans, animals, plants and objects. Evolutionary psychologists have taken this one step further and have claimed that these distinctions are hard-wired into the brain. We should first ensure that synthetic biology does not cause harm. We should also speak loudly against the simplistic category mistake that will result in a change in human self-conception. While I think that such a campaign will be effective, I would be much more worried if someone creates the “minimal human genome” as a “chassis” on which “cassettes” of desirable human properties are attached. Since this is all within the category of “human,” it would be much more difficult to stop a transformation in how we think of ourselves.

John H. Evans is Associate Professor of Sociology at the University of California, San Diego and a Visiting Research Fellow at the ESRC Genomics Policy and Research Forum at the University of Edinburgh during summer 2009.

Futher information:http://www.sociology.ucsd.edu/jhevans

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Dr Emma Frow, Research Fellow,

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Whether or not synthetic biology stands to change how we value human life, it certainly seems to be having a transformative effect on the new generation of researchers being recruited into the discipline. In November 2009, over 1000 undergraduate biologists, engineers and computer scientists from around the world gathered at the Massachusetts Institute of Technology (MIT) for the 5th international Genetically Engineered Machine (iGEM) competition. Armed with colourful team t-shirts, logos, mascots and posters, the 111 interdisciplinary teams presented their summertime efforts to design new biological machines. This year Cambridge took home the Grand BioBrick Trophy for their ‘E.chromi’ project, engineering the bacterium E. coli to produce a range of pigments.

For most iGEM participants, this was their first experience of scientific research. Brought together by their shared enthusiasm, creativity and ambition, the iGEM competition is helping to build a collective identity for synthetic biologists, one that is strikingly different from many established disciplines in the life sciences. To my mind the possible consequences of this could be quite profound.

For more about the 2009 iGEM competition, visit http://2009.igem.org

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Lara Crossland, Communications & Networking Officer, Innogen

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Ann Bruce swapped Innogen for Westminster to investigate vets’ and farmers’ attitudes to using new technologies to help diagnose animal disease. Ann’s three month ESRC Placement Fellowship at Defra, the Department of Environment, Food and Rural Affairs took place the end of 2009.

New devices could be used to improve animal health, but how will they work in practice? During her time at Defra, Ann Bruce interviewed farmers, vets and food chain professionals across the country to find out. Ann’s placement adds to Innogen’s expertise in providing insights into innovation, government policy and stakeholder attitudes and is an excellent example of how social science can provide Government Departments with research-informed evidence. The Challenge of DiseaseFor farmers, monitoring the health of their animals is an everyday part of the job. Most of the time, things are resolved by the expertise of farmers working with local vets. New technologies to help rapid identification of disease on farms could help this process. However, some situations have wider consequences. There are a set of ‘notifiable’ diseases1, foot and mouth being a well-known example, which have implications not just for the farmer but for the whole country. If an animal is suspected of having a notifiable disease, farmers are legally required to inform the Government immediately2.

This prompt reporting of notifiable diseases is essential. They are often highly infectious and can spread quickly. In some cases, all animal movements and exports need to be stopped. If an outbreak becomes an epidemic, there can be severe economic and social implications. At the extreme end, the 2001 outbreak of foot and mouth disease cost the UK about £7bn.

Currently, vets send samples from the infected animals to a very specialised lab to help confirm their diagnosis. This process can take some time, particularly if transport over long distances is needed. To resolve this, new devices to test animals on-site at affected farms and provide rapid results have been developed. Just how these new devices should be used in control of infectious diseases is under debate.

Linking Government and AcademiaESRC Placement Fellowships3 aim to promote knowledge exchange between academic departments and Government Departments and the staff employed within them. The scheme provides the opportunity for academics to work on focused projects as intermediaries between different communities.

In early 2009, Defra and ESRC advertised a Fellowship to research the behaviours, attitudes and wider social impacts of new veterinary diagnostic tests. Investigating how new life science based technologies are used is a research strength of the ESRC Innogen Centre where Ann is a senior Research Fellow. Like many Innogen staff members, Ann has an interdisciplinary background.

“I started my career in animal genetics and spent ten years working in the pig breeding industry” said Ann. “As time went on I got more interested in people’s attitudes towards the science and moved into social science. The placement with Defra was appealing because I’d worked in industry, for an NGO and in academe but never in government. It seemed like the ‘missing link’ between other areas of my career.”

Ann’s application was successful. After a few conference call discussions to plan things in more depth, Ann started her Fellowship in September 2009, which involved travelling to London each week.

Swapping a gentle stroll through the Edinburgh old town for a packed commuter train from Croydon was a bit of a culture shock, but not as much as arriving in Defra. “I expected it to be a caricature of the civil service: unresponsive, dull, inflexible and solid” said Ann. “It couldn’t have been more different.” The huge open plan floors filled with hot desks, used by all staff including senior management, created a team atmosphere. “It was an incredibly motivating place to work, there was a real buzz to the office and everyone was hugely welcoming”.

The flexible working environment had its benefits. On Tuesdays, Ann worked on the first floor with the Strategy and Evidence Group staff, and on Wednesdays and Thursdays on the 4th and 5th floors with the veterinary groups.

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“The friendly culture definitely made it easier to collaborate with people linked to different aspects of my project” said Ann. “My interdisciplinary background was also very valuable. My years in the pig breeding industry gave me some common ground with vets and farmers. I think this helped me understand the project more quickly.”

The fast paced atmosphere, though stimulating also created challenges. Ann’s project had many stakeholders and negotiating their requirements proved tricky, particularly as civil servants are very busy people with diaries booked out months in advance. People also tend to move between departments regularly which made it hard to maintain a network of relevant contacts.

As part of the project, Ann interviewed over forty vets, farmers and food chain professionals across the UK to find out their views on the diagnostic tests.

“The people I interviewed appreciate the need for fast diagnosis” said Ann “but they stressed the importance of being confident that the diagnosis was correct. For many, having confidence in the accuracy of the tests was the major issue.” The wrong decision can result in unnecessary panic and the slaughter of healthy animals. Acting too quickly on the wrong information can be just as damaging as acting too slowly. Nevertheless, people identified a number of specific applications were where the devices seemed to have particular benefits.

Despite the short time scales, Ann also organised a collaborative workshop with the Technology Strategy Board, Defra, the ESRC and two Knowledge Transfer Networks. At the workshop, thirty eight vets and members of the farming community discussed four scenarios based on Notifiable Diseases. Their mixed reactions were consistent with Ann’s findings in the field. There were also concerns that valuable clinical knowledge and experience could be ignored. There is a temptation to rely purely on the device to give a definitive diagnosis rather than see it as part of the process that takes into account other important information.

“I don’t think the findings of the project were completely unexpected by Defra” said Ann “but it was valuable to research the issues in-depth systematically, and from a neutral perspective. There are a number of incentives for using these devices, but also a number of barriers. I hope my work has helped to provide insights into these.”

“On a personal level, I found the placement to be exhilarating, hugely motivating and exciting” said Ann, “I just wish I could have stayed longer. It’s surprising how fast you get used to those packed commuter trains.”

References and Further Information

1 Link to list of notifiable diseases

http://www.defra.gov.uk/foodfarm/farmanimal/diseases/

atoz/notifiable.htm

2 A notifiable disease is a disease named in section 88 of the

Animal Health Act 1981 or an Order made under that Act. Section

15(1) of the Act says that:

“any person having in their possession or under their charge

an animal affected or suspected of having one of these diseases

must, with all practicable speed, notify that fact to a police

constable.”

3 Link to ESRC Placement Fellowships website

http://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/

KnowledgeExch/Government.aspx?ts=2&data=

For many, having confidence in the accuracy of the tests was the major issue.

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How did you end up working at Egenis?A friend alerted me to the position – at the time I was working in my native Germany. Moving a family to a new country and working in a new language was rather challenging, but I am happy I took the opportunity and I have benefited enormously from the experience and environment. Egenis is a great project and a great step in my professional development.

Have you always been interested in genomics?I had been working on philosophical and ethical questions related to genetics and stem cell science – thinking about the cell as the starting point, not the gene. This cell biology perspective had an impact on my view of genetics. I could never understand why so many people got ideologically hooked on the phantasm of genetic determinism. Crude determinism is not a theoretical option when all these differentiated cells have the same genome in terms of DNA sequence.

What are you currently working on?My current role as Acting Director of Egenis means that I have to guard my research time. I am continuing my work on stem cells as well as developing a project based on the implications of the new forensic testing procedures used by the police. Both these projects deal with the making of scientific “truths” and I am very interested in the boundary between what counts as valid and invalid science. I am also co-organising a workshop series and

further research on the mechanisms of fraud in biomedicine with colleagues in London.

What have been your highlights of the last 12 months?The identity politics workstream was a fantastic collaborative experience and will lead to excellent joint Network publications in the coming years. The identity politics work has also led to close engagement with the Human Genetics Commission, the Department of Health, and the police, which opens up exciting new perspectives.

Who is your current work of interest to?Everybody should take an interest in the ways in which knowledge is made and action justified. The gene is just one of the elements that make the body work as it does – a simple mechanistic view of genetics cannot be upheld. Genetic determinism and other such theories that seek to identify a single well or source from which the actuality of things originates rely on a specific western set of metaphysical premises. They invite a mode of thinking and a political grip on the world that has been identified by critics from different perspectives as either reductionist or patriarchal in various senses. Such hegemonic concepts lead to strongly territorial and discriminative politics. I would like to bring an understanding of this to the general audience.

What is the most satisfying part of your job?When it’s fun! I do love discussions on many varied topics. I also enjoy the

public role, giving talks, participating in workshops and panels. But on a different level of happiness and satisfaction, I love my work particularly when finishing a piece of writing.

What is most frustrating?Not having a few days in a block for writing leads to frustration, sometimes, and I have begun to create islands of time to avoid this. Also, I find it very disappointing to have grant applications on which I have worked very hard rejected – which will be the same for all academics.

What do you feel have been your key achievements?I think of achievement in terms of making valuable contributions to our research field. I bring the interdisciplinarity of my extensive training in continental philosophy, sociology and psychoanalysis to the field, sometimes introducing a slightly shifted perspective on questions of science, ethics and technology in society. I also regard as important the transfer of knowledge and a critical attitude to students and users. I know that the many activities and lectures I have been engaged in over the past 10 years have influenced the views of many people including some policy makers.

Where would you like to be in 10 years’ time?I want to continue the kind of work I am doing. However, while I am interested in the concrete study of authoritative institutions, I wish to go beyond science and medicine, which have been extensively studied in the past 20 years, and work more on their relation to politics and governance. I have a longstanding interest in the formation of the individual self and collective selves by internal and external forces. This theme is where I will direct my future thinking.

MyWorkingLife

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Published by: ESRC Genomics Network, Managing Editor: Emma-Elizabeth Capewell, Editors: Lara Crossland, Claire Packman, Flo TicehurstGraphic Design: Heehaw Digital

The ESRC Genomics Network (EGN) is Cesegen, Egenis and Innogen, examining numerous aspects of the social and economic significance of genomics, and theESRC Genomics Policy and Research Forum, tasked with connnecting this research with national policy.

The ESRC Genomics Network Newsletter is FREE and published twice a year.

To subscribe please contact: info@genomicsnetwork.ac.uk

Image credits: ©iStockphoto.com/enot-poloskun (p7), ©iStockphoto.com/RonTech2000 (p8), ©iStockphoto.com/maakenzi (p9), ©iStockphoto.com/lisegagne (p14), ©iStockphoto.com/jaroon (p15), ©iStockphoto.com/farbenrausch (p28).

Disclaimer:The views and opinions expressed in this publication are those of the contributors and authors of the articles, and are not necessarily the views and opinions of the ESRC Genomics Network. Whilst every effort has been made to ensure the accuracy of the information provided, neither EGN nor its employees or agents can be held responsible for any inaccuracies or omissions in this publication whether caused by negligence or otherwise.

The opinions expressed in this newsletter are not necessarily those of the ESRC or the ESRC Genomic Network

Copyright © ESRC Genomics NetworkThe University of Edinburgh is a charitable body, registered in Scotland, with regulation number SC005336.

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