Welcome to the Genomics Forum blog

Based at The University of Edinburgh, the ESRC Genomics Policy and Research Forum is part of the ESRC Genomics Network and pioneers new ways to promote and communicate social research on the contemporary life sciences.

Thursday, 21 June 2012

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.