EGN Conference 2013 - ESRC Genomics Network: As one phase ends, another begins…

by Chris Berry, Genomics Forum Press and Communications Officer

#egn13

The final session of the 2013 EGN conference was appropriately dedicated to examining how engagement between the social and life sciences would continue beyond the Genomics Network.

In his introduction, the session chair – Graeme Nicol, Former ESRC Research Committee Member and Impact Champion – indicated how appropriate it had been that the conference had focused on the “return on ESRC’s investment” the Network had achieved during the last decade, demonstrating exactly how substantial this had been. With that investment now nearing its end, the closing session of the conference would allow the Directors of the four Network Centres to not only to look back on their work, but to also to highlight the future plans and trajectories for these.

The Genomics Forum was first to contribute, with former Deputy Director, Dr Steve Sturdy, speaking in place of Forum Director, Professor Steve Yearley, who unfortunately was unable to attend the conference due to illness.

Steve commended the ESRC for, 10 years ago, having the vision to identify the important transformations that developments in the life sciences were beginning to have upon society. The ESRC responded accordingly by funding the three research Centres and the Genomics Forum to investigate and engage with these societal impacts, under the umbrella of the Genomics Network.

Elaborating on the work of the Genomics Forum, Dr Sturdy indicated that the ESRC was visionary in establishing this not to undertake research, but to provide an interface between the issues being researched by the other three Centres and key stakeholder audiences, including scientists, policymakers and the public.

Steve concluded by indicating that even though there would no longer be a role for the Genomics Forum beyond the end of the Genomics Network, an element of “Forum-ness” has been inculcated into the remaining Centres and more widely, and this would act as a fitting legacy to the Forum’s work and impact.

Professor David Castle spoke about the future direction of Innogen. He indicated that the partnership between the University of Edinburgh and the Open University would endure, and this had been cemented by the establishment of a memorandum of understanding. The Centre was undertaking a process of rebranding; reflect its ongoing movement away from its original focus on “genomics” to a more general interest in socioeconomic influences resulting from the life sciences and technical innovation.

David further indicated that the repositioning of Innogen to become the Innogen Institute would be phased, with the new Centre increasing its activity on the run up to the final cessation EGN-related research in March 2014. The work of the new Innogen Institute would build upon that of the old Centre, which had recognised publications in almost all areas of “the Web of Science”, and the Institute’s work would be supported by an ever increasing number of UK and international funders.

Professor Castle also noted that as well as undertaking research, the new Institute would focus upon providing tailor-made training, such as the new MSc in Management of Bio-economy Innovation and Governance.

Setting out the future direction of Cesagen, Professor Ruth Chadwick indicated that the formal collaboration between the Universities of Lancaster and Cardiff would cease in June 2013. However, a number of pre-existing links and collaborations will continue, resulting in tangible outputs such as the journal New Genetics and Society.

Cesagen will continue as a Cardiff-based centre for social science research, but it would transform itself to become the Centre for Ethical and Social Aspects of Genomics and Epigenetics (CESAGENE). Ruth stated that research activity would be located at the Cardiff School of Social Sciences, but would also feature internal collaborations with other schools at Cardiff University. Cesagene’s research would focus on key themes that include: personalised medicine; epigenetics; ageing; and food.

Egenis Director, Professor John Dupré, started by identifying that his Centre had a different background to the others within the Network, resulting in some distinctive features in the work Egenis undertakes. Specifically, Egenis has brought together the fields of sociology, STS, the philosophy of science, and (increasingly) anthropology, which do not necessarily naturally complement each other. Its work has been wide-ranging during the last decade, covering subjects as diverse as polygenic disease, the “philosophy” of stem cells, and “big data”.

John set out that his Centre will also continue beyond the end of the Network, with Egenis being the title that represents the Exeter Centre for the Study of the Life Sciences. The Centre would continue to focus on research into areas such as: genetics and identity; health technology and its impact on society (and in particular, the role of diagnosis); autism, dyslexia and ADHD; and the role of data within research.

Professor Dupré will continue as Director of Egenis. In addition to this role, he will lead a project relating to the ontology of contemporary biology.

With the Centre Directors having set out their visions of the future for their respective institutions, the ESRC Chief Executive – Professor Paul Boyle – concluded the conference. He stated that the ESRC had made a very wise choice when it agreed to fund the Genomics Network a decade ago. The Network exemplifies the historic and future requirement for research into the societal impact of developments in the life sciences, and it will still be a number of years until it is known exactly how successful the ESRC’s investment has been. In many ways, “This is not the end…” Professor Boyle stated. Although the ESRC may not now fund the Network directly, it will remain very supportive of the sort of social science research Network Centres have, and will continue, to undertake.

Letting the Genome out of the Bottle - Lone Frank, 27 August 2012

Genomics Forum blogging team at the Edinburgh International Book Festival 2012
Blog by Hazel McHaffie

Genomics - essentially the study of all the genes of a cell or tissue at the DNA level - is a relatively new field of enquiry. And it's been said that the map of the human genome is 'the most wondrous map ever produced by humankind'. It has certainly raised huge questions for society, and the knowledge it provides has widespread consequences for individuals, for families and for society.

Lone Frank is an internationally acclaimed Danish science writer with a PhD in neurobiology, who has grappled with these questions, and written a fascinating book, My Beautiful Genome: Exposing our Genetic Future One Quirk at a Time. To see her is to instantly think that she's been blessed with more than her fair share of favourable genes - good looks and brains, performance skills as well as rigorous analytical powers.

The elements were against us on this occasion with rain thundering down on the roof of the Book Festival’s theatre, and a rather end-of-term feeling on this last day of the Book Festival. She though, was probably less surprised by the fact the event was not a sell out: when she proposed writing a book on this subject, friends warned her that nobody would be interested in genomics. On the contrary, people are, and the questions reflected considerable knowledge of her field. She was challenged more than once to explain her terms and the accuracy of her statements. My own limited understanding means I can only report what I've gleaned from her words and her book.

When Tough Decisions are on the Menu - Helen FitzGerald & Herman Koch, 24 August 2012

Genomics Forum blogging team at the Edinburgh International Book Festival 2012
Blog by Hazel McHaffie

How much responsibility should parents take for their children? And how far would you be prepared to go for those you love? When is it right to sacrifice the good of an individual for a greater good of the many? These are important questions for individuals and for society. And questions that hold a particular appeal for me right now since I'm exploring them in my current novel about organ donation and child protection. So I went along to the Spiegeltent with high hopes early on Friday morning.

But the first question that struck me once I arrived was why were so few people interested in these questions/authors? The ambience in the Spiegeltent is friendly and relaxed, coffees on tap, but only a tiny group of people attended. Was it simply too early in the morning? Or do readers not want to address such hard issues? Are there implications here for novelists like me?

The chairman, agent Jenny Brown, set a light tone to what could have been a difficult event with a quip about the similarity of the titles: The Dinner and The Donor, which led nicely into a question about the use of comedy in both books. It came naturally to both authors. Though Australian Helen Fitzgerald was formerly a criminal justice social worker, working with rapists, murderers and psychopaths, she is herself one of thirteen children. She therefore grew up with humour part of her normal currency, a reality which she took into her professional life too. Indeed, she misses the rich source of material provided by her work with criminals, now that she has become a full time novelist. Humour in his writing came easily to Dutch TV and radio producer, actor and writer Herman Koch, too, because his TV work involved comedy.

DIY-Bio: Empowerment or Anarchy? 13 August 2012

Genomics Forum blogging team at the Edinburgh International Book Festival 2012
Blog by Chris Berry

In bedrooms, garages and lock-ups from the USA to Europe and Asia, a new approach to life sciences is taking shape.  Working individually or as collectives, “biohackers” – citizen scientists operating outside the constraints of academic or commercial biology labs – seek to adapt the genetic code of organisms such as bacteria, in order to modify the way these behave. 

Yet what leads people to participate in this DIY-bio movement?  Will it empower amateur biological scientists to make important breakthroughs that will benefit society, or are there dangers and threats associated with such unregulated genetic tinkering?  Or is DIY-bio nothing more than an interesting hobby making only a limited contribution to progressing scientific understanding?

The Moral Limits of the Market - Michael Sandel, 13 August 2012

Genomics Forum blogging team at the Edinburgh International Book Festival 2012
Blog by Hazel McHaffie

As I stood in the queue around Charlotte Square waiting to go into the Main Theatre, a young man approached the elderly gentleman in front of me to ask what this session was about. 'Money and greed', came the answer. 'Ah, that's why there's such a big queue,' the young man said, and walked away. The summary was only partly accurate; the discussion was much more finely nuanced than that.

And I use the word 'discussion' advisedly because American political philosopher, Michael Sandel, adopted the same techniques he uses in his now famous course on 'Justice', at Harvard University, a course which he's taught for two decades: a winning combination of facts, case studies, and challenges to provoke active participation. Nearly a thousand students pack the halls of Harvard to listen to him, and there his challenges include questions like: Is torture ever justified? Would you steal a drug that your child needs to survive? Is it sometimes wrong to tell the truth? How much is one human life worth?

Hazel McHaffie - telling an ethical tale

Hazel McHaffie in conversation with Dr Shawn Harmon

Blog by Hazel McHaffie

I was delighted to work alongside the good folk of the ESRC Genomics Policy and Research Forum recently on one of their Social Sessions, giving the public an opportunity to discuss topics related to social science research with individuals who are exploring these issues in different ways. The Forum's thinking and aims very much reflect my own, and they're a lovely friendly bunch of people.

I was invited because I'm a novelist, but a novelist with an agenda. My principal objective is to encourage people to engage with the issues thrown up by modern medicine, because these topics are exciting and affect us all, and the way we respond to them affects the kind of society we live in. But I want the books to be as accessible for the man/woman in the street who's looking for a gripping tale to escape into, as well as a useful teaching tool for philosophers and ethicists - an enjoyable read first, but also challenging. So how did I get here?

In a former life I was a nurse and midwife. As a clinician I couldn't help but be aware that in medicine we keep pushing back the boundaries of what's possible, but on the coalface there are big consequences for patients, relatives, doctors and nurses, and huge questions to be faced. How far should we go to save wee Tommy's life? How big a risk should we take with Jenny's treatment? How valuable is my life now: do I really want to extend it further?

It was while I was working in a Neonatal Intensive Care Unit that these challenges hit me most powerfully. I hunted for answers but could find very few, and the discovery of that gap took me out of clinical practice into research. Studying for a PhD in Social Sciences at Edinburgh University gave me the requisite skills to explore these difficult topics and I spent over twenty years investigating the impact on real families of the big questions about life and death. I loved it. Explorer, detective, confidante, writer, campaigner, all rolled into one! Brilliant.

My last study involved interviewing 109 bereaved parents about the decisions relating to how far we should go in treating extremely small sick infants. Spending years with these ordinary families going through extraordinary experiences, listening to their stories, changed me for ever. And their voice was so powerful that the report of this study (Crucial Decisions at the Beginning of Life) was voted Medical Book of the Year by the BMA in 2002.

But that experience was a turning point in a different way too. I realised I could never do another piece of research more poignant or more significant than that. And I’d always promised myself I'd depart on a high, not fizzle out, a dinosaur on the conference circuit. So I changed tack again.

Whilst lecturing on my research both in this country and abroad I'd become very aware that the theoretical subject of medical ethics sent people to sleep (literally!); the practical realities had them on the edge of their seats. Ahah! Everyone loves a story. The idea for novels in this area took root. This would be my next adventure.

I published my first novel in 1994 but shudder now recalling it. I made the mistake of thinking writing fiction was very much like non-fiction. It isn't. And I'd dearly like to bury that first book beyond recall. I subsequently undertook a creative writing course, and later still acquired an editor - both invaluable for honing the necessary skills.

I've just published my seventh novel, Saving Sebastian, about a little lad of four who has a fatal form of anaemia, and his parents are wanting to create an embryo who's the same tissue type to provide stem cells to save Sebastian's life - a saviour sibling. Of course it's all wrapped up in a tale of mystery and skulduggery and conflicting relationships. But essentially each of my novels revolves around a different ethical dilemma; each with its own challenges. My website (www.hazelmchaffie.com) captures the feel:

• An infertile man, a desperate woman … why not use a sperm donor? (Paternity)
• In a coma for years … so how is she pregnant? (Vacant Possession)
• A fatal disease, a haunting secret … would you help him die? (Right to Die)
• Security or truth … which would you choose for your dementing mother? (Remember Remember)

I've had to work hard at achieving a balance between the story line and the facts and arguments. It's essential that the information is accurate and authentic and I get experts to scrutinise every detail, but it's just as important that the story hooks the reader in, or they won't even start to engage with the issues. I want them to feel the emotion and be exercised by the choices. So I've reserved specific discussion points and links to further information for my website.

It's a fantastic job and I like to think it’s contributing in its own little way to helping society engage with the big ethical dilemmas thrown up by advances in modern medicine. Just what the Forum is doing on a much broader scale.