Hazel McHaffie

organ donation

Challenges and choices

The International Arts Festival is currently in full swing in our fair city, and it’s easy to get caught up in the exciting momentum of events and performances. Guilty as charged.

But of course, for many, far far more serious questions beset them than which actors, writers, musicians or artistes to support. I currently have six special people on my worry/prayer list all facing major challenges in relation to their health, life and death.

It’s not appropriate to be specific about them, but perhaps they are behind my extra sensitivity to the difficult choices so many face. For this post I’m thinking of those people who’re involved in the consequences of legal change, medical advances or financial restrictions associated with healthcare – my kind of workaday world. I’ll enumerate but a few (with links) reported in the national press in just 36 hours by way of illustration. All raise a number of thorny issues and I leave you to ponder those for yourself.

Relatives and health care workers caring for patients trapped in unresponsive bodies with minimal or no consciousness no longer need to go to court to resolve the question of withdrawing/withholding life sustaining measures. Decisions about dignified death can be made quietly and privately in a timeous way.

In figures released last month, the first trial of a pioneering immunology vaccine called DCVax has shown some real promise. DCVax essentially uses the patient’s own immune system to fight the tumour, tailoring treatment to their specific needs. This trial has already been running for 11 years and came to public attention when MP Dame Tessa Jowell was not eligible to receive DCVax for her glioblastoma. Sadly she died in May, but not before she had successfully campaigned for increased funding for brain cancer research. To date patients have needed to stump up £200,000 for this treatment.

New National Guidelines, known as Saving Babies’ Lives Care Bundle, have been issued in response to the alarming statistic that 600 babies could be saved from stillbirth annually if the mothers were adequately monitored.  SBLCB focuses in on the incidence of smoking, signs of failure to grow, reduced fetal movement, inadequate monitoring in labour – risk factors that were all known about decades ago when I was in clinical practice. Given that 3000 babies are stillborn every year in England alone this seems like an important area to concentrate on.

ASDA has apologised for selling a pregnancy test that issued false results leading a young woman in Devon to believe she was pregnant when she wasn’t. However the store has not recalled this product and insist it has been quality tested.

One in five people who have eating disorders have their lives cut short, but a considerable number are turned away from help because they are not skinny enough. And this in spite of National Institute of Health and Care Excellence guidance to disregard body mass index. (I found this to be true when I was researching Inside of Me.) A campaign is now underway to ensure the NICE guidelines are being adhered to.

News at the end of July was that more than half of Scotland’s population have pledged to donate their organs and/or tissues after death. That’s the highest rate in the UK and comes after a high profile awareness campaign. It’s good news for the 550 or so waiting for transplants and a significant factor in the discussion about whether we should change to an opt-out system, currently under review. Interestingly 90% of the population support organ donation, so one wonders about the mismatch.

I could go on but I promised just a brief snapshot. But I’m doing my best to keep perspective during my annual summer sortie into the world of drama and art.

 

 

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Ethics in the news

Every now and then I like to give you a glimpse into the world of medical ethics that continually fires my imagination. Just since I wrote my blog last week we’ve had the following stories in the media – apologies in advance, the list grew and grew as the week went on! See what you think about them? Do you have any simple answers? What would your solution be? Where does your mind travel? I’ll give you links so you can find out more about any of the cases you’re interested in.

Thinking about a solutionA grandmother has given birth to a surrogate child for her single son in his mid-twenties using his sperm with a donor egg. A judge has ruled that, though unusual, the arrangement is entirely lawful. But … is it ethically acceptable? Who is brother … father … mother …? What about sixteen years down the line? My mind goes into overdrive. How about yours?

Zach Parnaby is 20 months old and his family are already working down a bucket list of his favourite things before he dies. He has Krabbe Leukodystrophy. A pinprick screening test could have detected the disease soon after birth, giving them the option of a bone marrow transplant, but his parents were told it isn’t done for cost reasons. Is this reasonable and just? What price would you put on a child’s life? How would you juggle competing demands for limited resources?

Sarah Marquis is a 41 year old lawyer specialising in white collar crime. In 2008 doctors failed to spot that her appendix had burst and she was rendered infertile. The hospital have admitted liability but their lawyers are insisting that she deserves less compensation because she has been free to pursue her career without the breaks necessary for child bearing. Is this appropriate and fair? What if she went on to have a child through IVF … ?

17 years ago Zephany Nurse was stolen from her sleeping mother’s arms. But now, by a coincidence, she has met up with her biological sister and been reunited with her birth mother. Her abductor, whose own child was stillborn, apparently cared for her well, and this week we heard that Zephany refuses to testify against her. Should the woman be allowed to go free? Who do you think should best occupy the parenting role?

QuestioningFrom this week Canadian patients will be allowed to ask their physicians to help them end lives that have become burdensome to them. Their Supreme Court ruling was unanimous. Do you agree with them? Should the UK follow suit, d’you think?

Seven years ago an NHS consultant had a malignant growth removed from her thyroid gland and was discharged home the following morning, even though she was already showing signs of a dangerously low calcium level in her blood. However her medical knowledge told her she was in big trouble and she dialled 999, saving her own life. She has just been awarded a six figure sum by the hospital trust who admitted liability. How would this have all panned out if she’d been your average ordinary Joe Bloggs?

A US study has found that hard physical work damages a man’s sperm. So …? Does this give men the right to refuse to work on the grounds of their human rights? This could get interesting!

A proposal has been made that seriously ill patients could be offered organs from high risk donors (eg. cancer patients, smokers, the elderly or drug users) to help address the chronic shortage of available organs for transplant. Let your mind ramble over the possible scenarios of this in terms of the possible donors … Would you accept second best … for yourself? … for the person you love most in the world?

ImaginingThe NHS has just launched a controversial online calculator. It’s said to predict when someone will have a heart attack or stroke. Hello? Would you wish to be told that? Would you alter your lifestyle to prevent it? Would that negate the prediction? A couple of days later we’re told that ‘two families will be the first to receive personalised care based on their DNA as part of a national plan to sequence 1000,000 genomes.’ Is this science fiction coming true? Or a utopian dream? Where will it lead?

Back to the humdrum everyday … A survey of more than 1000 cancer patients has found that 1 in 10 is left unwashed, undressed or untoileted because of a lack of careworkers. And we all thought cancer was high priority; it was the elderly who were neglected. But then we hear that 26% of councils in England failed to properly consider the needs of people with arthritis, and 66% failed to consider back pain – conditions which affect 7 million people in England and account for £5 billion of NHS spending. What do these studies say about the allocation of resources and priorities? Oh, but hey ho, on the same page … scientists have found a class of drugs that dramatically slow ageing … in mice at least. So is this where the money will go? An elixir of youth? Ahhh, wait a wee minute … plans are in hand to build the UK’s first proton beam therapy cancer treatment centres in London and Manchester. Just who is deciding how and where the money is being allocated here? And if you were in charge …?

Still with resources … As from this week 16 very expensive drugs which have been clinically proven to increase the lifespan of terminally ill patients, are to be removed from the approved list of the Cancer Drugs Fund, as announced in January. Imagine your beloved was dying prematurely … Is it possible to reduce the well-being and hope of any family to pounds and pence? Should drug companies be allowed to raise obscene amounts of money from the tragedies of others?

Ex-serviceman Chris Graham is 39. He has a 6 week old baby. He also has early onset dementia. It’s in his genes. His brother has it; he’s 43 and totally incapacitated and dependent on others. Their father, grandfather, aunt and cousin all died of it in their forties too. Chris might have passed it on to his baby son. At what point should a halt be called to this perpetuation of tragedy? Should it ever? What if scientists modified the family germline …?

These news items were all reported in just one week of the year – a mere 7 days. They’re the kind of clippings that find their way into my ideas folders because they set my brain asking, ‘What if …?’. ‘Supposing ….’ ‘Would this be believable?’ Trouble is, my brain has a finite capacity … and shrinking! And there simply isn’t time to turn all these possibilities into stories.

(NB. For the purposes of this blog I’ve made no effort to pursue the facts behind these stories; I’m just sharing what anyone might know from the papers.)

 

 

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Moral obligation

Every now and then something crops up that challenges my thinking on ethical issues, and I’m reminded all over again that these questions are always evolving and it behoves me to stay on my toes and constantly revisit them.

This week it was a half day seminar on ‘Leaving your brain to science: Engaging with law and ethics’, organised by Edinburgh University. Now, although I’ve been immersed in the subject of organ donation for the last few years, as you know, I hadn’t explored giving the brain specifically, so I was intrigued to know what would emerge. I won’t bore you with the details, but I’d like to share something of the workshop that concluded the day.

It focused on moral obligation. We were given a collection of possible actions which might be of benefit to others and asked to rank them in order. At one end was ‘MORAL OBLIGATION’ which essentially meant the action is of recognised benefit to others with very little risk to oneself, making it something where there is a high level of obligation to carry it out (eg. on finding a fire one should summon the fire brigade). At the other end of the scale was ‘MORAL SUPEREROGATION’, meaning that the action might well be deemed praiseworthy, but it carries risks of such an order that there would be no obligation to do it (eg. rushing into a blazing building to rescue someone); it goes way beyond what might be considered a duty.

Rating moral obligationThe actions to be ranked were:

Live organ donation

Cadaveric organ donation

Egg donation

Sperm donation

Giving samples of tissue for research

Bone marrow donation

Donating the brain for research

Blood donation

How did YOU respond?Why don’t you try it yourself? Weigh up the potential benefits and costs and see where you feel a sense of duty/moral obligation takes YOU. You might well be surprised – as I was – at where ‘giving your brain after death‘ comes.

 

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Book Week Scotland

Well, that’s Book Week Scotland over for another year, and my own part in it was great fun.

Poster in the libraryThe library was looking very colourful with rainbow posters and plenty of displays and the librarian somehow managed to offer everyone who came a hot drink as they arrived – a lovely touch on a cold dark November evening. I was talking about Over My Dead Body and organ donation, and the audience were brilliant – very engaged with the practical and moral issues as well as the literary ones. I threw out a few challenges during my introductory talk and the responses came thick and fast in the open session. It always gives me a real buzz having folk talking about the topics in my books. – in this case, about the difficulty of giving eyes … about the difference between donating one’s own organs compared with those of your child … about cellular memory (where people believe characteristics of the donor are passed on through the tissues) … about who should or should not get organs …

I learned afterwards that there were several nurses in the audience but they kept a very low profile. However, one man who’d had an organ transplant himself, bravely shared some of his thinking and experience in open debate. Fantastic. And one-to-one discussion continued over the book signings which always pleases me. It’s lovely to actually meet the people who read my books.Signing booksThanks everyone.

As I post this blog there’s a ferocious storm raging across Scotland so stay safe out there.

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Topical stuff

I know my antennae are always tuned to pick up the merest sniff of medical ethics but this week has been a veritable bonanza in the media. Would these headlines grab you too, I wonder? Do the questions trouble you?

Liverpool-pathwayThe controversial Liverpool Care Pathway, for example. Designed to ease the final hours or even days of a terminally ill person’s life: is it being abused? The son of an elderly woman who died in an Edinburgh hospital thinks so. He has accused her doctors of ‘murdering’ her, and the newspaper headlines certainly make the case sensational. At the moment the circumstances are being investigated by the Scottish Fatalities and Investigation Unit, and if anything suspicious is found, it will trigger a police investigation – the first relating to an individual death to be officially dealt with in this way. How do you feel about the LCPathway?

3-parent babiesThen there’s the major news that this country is set to become the first in the world to approve the creation of so-called three-parent babies – a way of allowing couples with major defects in their mitochondria (the bit around the nucleus that contains around 37 of the total 2,000 genes) to have healthy children who don’t die young. What a stooshie that’s causing! And that’s in spite of the fact that it’s the nucleus that carries all the genes for looks and behaviour. And you’re saving babies and parents terrible suffering and distress. Ah yes, BUT it’s genetic modification on human beings, with permanent results for generations to come. And the nucleus and mitochondria don’t operate in isolation; they talk to one another. And the mitochondrial cells control metabolic functions. Who knows what you might be unleashing … and unable to reverse. How say you?

Mandela decisionsThousands of miles away there’s another scenario playing out that currently has the media here in a frenzy. 94-year-old Nelson Mandela is on life-support machinery. The world reveres this man. His countrymen are fervently praying for his recovery. He has six children, 17 grandchildren, and 14 great-grandchildren, who are riven by disagreements and conflict at a time of private sorrow. Decisions about allowing life to end are notoriously difficult – in this case they are set against a nations’ wishes, cultural diktats, family feuding, in the full glare of the media’s eyes. Who should decide? What should they decide?

The joy of lifeRock guitarist, Wilko Johnson, (real name John Wilkinson) is dying of cancer but he’s been inspiring millions with his up-beat approach to the life he has left and his sheer humanity. He had no idea apparently until he saw so much emotion at his farewell concert, that people felt a real personal affection for him. He knows cancer intimately – his wife, his mother, and co-founding member of Dr Feelgood all died of it; he has no faith to sustain him; and yet, in many ways he says, he feels more alive than ever, and a special joy in existing, because he knows every day is special.  How would you respond?

Gene copyrightSpeaking of cancer … should companies be allowed to put a copyright on the genes that cause the disease? Myriad Genetics patented the two major breast cancer genes, BRCA1 and BRCA2, even though the search for the genes was a collaborative effort by thousands of scientists, many of whom were publicly funded. The firm also holds European patents on tests for the disease. In practical terms this means that the UK might be at risk of infringing copyright laws (with all the consequent lawsuits and outstanding royalties) with their own tests using publicly available genetic data. When Angelina Jolie revealed her double mastectomy, she drew attention to the cost of genetic testing (in the region of $3,500). What do we in the UK with our free-at-the-point-of-need NHS make of all this? What do you think?

Phoned decisionsI could go on, with this week’s tales of and life-and-death decisions being made over the phone;

Opt-out donationand Wales approving a system of presumed consent for organ donation, oh and altruistic organ donation (in journals and weekend supplements); and … but I won’t. Your brains are probably crying out for rest after the questions I’ve already thrown into your court.

By way of light relief, in between all this heavy-duty thinking, and working on the publication of Over my Dead Body, I’ve been reading Melisa Hill’s Before I Forget. It’s about a girl whose memory is destroyed in an accident. From the blurb it sounded to be close to my interests, so I picked it up in a supermarket. But … oh dear. Not my kind of thing at all. Style of writing, plotting, characters – I wanted to edit everything. And yet she has THE NUMBER ONE BESTSELLER plastered over the cover.  She’s published by one of the big firms: Hodder. Ho hum!

 

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Timing

It’s five years now since my novel Right to Die was published. In the run up to publication day I fretted when news stories related to this issue appeared. Would they steal my thunder and make it look as if I was jumping on someone else’s bandwagon?

Right to DieHow absurd. Here we are in 2013 and the subject continues to grab the attention of reporters and the public.  Only this week the case of Paul Lamb, a 57-year-old man who’s been paralysed for the past 23 years after a road accident, hit the headlines. He’s taken up the campaign (initiated by Tony Nicklinson and discussed here) to legalise assisted death. He too is unable to do the act himself but wants any doctor who helps him to be immune from prosecution.This issue isn’t going away any time soon and Right to Die is as relevant today as it was in 2008.

Whenever and wherever one contemplates slow deterioration and indignity, pain and suffering, the prospect is horrific. It doesn’t take much imagination to see why a swift end to it all might seem preferable. How to live through the process and achieve a good death is the question.

But speaking of death, I was hugely impressed by best selling novelist Iain Banks‘ recent wry announcement about his own impending demise. As he stated on his website: ‘I am officially Very Poorly.’ He is. He has inoperable gall bladder cancer with numerous secondaries and doesn’t expect to live beyond a few months. His current novel will be his last and his publishers are rushing it through to give him a sporting chance of seeing it hit the shelves. He adds with the sort of ghoulish humour which is helping him deal with this tough situation, ‘I’ve asked my partner Adele if she will do me the honour of becoming my widow.’ The style and language of a brave man and a truly accomplished writer.

My own mark will be infinitessimal compared with his but I still worry about the impact of my books and the timing of their publication: the subjects I deal with do have their moment in the headlights. I couldn’t believe it when last week the press picked up on the fact that organ donation rates had risen significantly. and splashed it everywhere in capital letters. And blow me, the topic even came up in fiction in BBC1’s medical drama Holby City, with the death of a young doctor during brain surgery. She’d requested her organs be used and there was a dispute in the family. Hey, that should all have come after Over My Dead Body was published, not while it’s in the starting blocks!

But supply is still falling way below demand when it comes to human organs so all is not lost yet. Indeed, I doubt it will ever be too late to publish a book about transplantation in my life time.

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Red roses and beating hearts

Last summer I wrote a piece about teenager, Hannah Jones, and my brother, Rob – both of whom made difficult choices in relation to treatment for cancer. Hannah declined a transplant, Rob accepted.

This week I’ve been in touch with both. Rob I saw in the flesh at a family wedding. Hannah’s Mum, Kirsty, contacted me through my blog – what an unexpected and delightful surprise. Hannah's ChoiceAnd subsequently Hannah herself emailed, and we’ve started up a lovely conversation.  I was impressed all over again, not only by their courage, but the generosity of spirit they show in sharing their stories. Happily both are still alive and a vital part of loving families. But Hannah is feeling rather poorly at the moment so loads of good wishes are winging their way to her.

It’s Valentine’s day today and all this week STV is supporting the nationwide From the Heart campaign, which aims to raise awareness of organ donation. As you know, my current novel, Over My Dead Body, is about this very issue, so my antennae are out there quivering like crazy.

The focus of the campaign is twofold: to encourage viewers to join the organ donor register, and to talk to their loved ones about their wishes. The blurb says that there are ‘currently around 10,000 people in the UK who need a transplant and a thousand of them die waiting every year. Yet only 31% of people have registered as donors – a much lower proportion than some other countries around the world.‘ And apparently, 45% of families say no to donation because they don’t know what their loved one would have wanted. That’s a quite shocking statistic in these days of easy communication, isn’t it?

I like the timing. In Valentine’s week, whatever the state of their own love life, everybody has the opportunity to give a gift that could potentially save or transform the lives of others. And talk to their nearest and dearest.

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Dramatis Personae

I spend time each month with people whose memories are not what they once were. And – dare I admit it? – I’m increasingly conscious that mine is more selective than it used to be. So my ears pricked when this week Baroness Joan Bakewell made a comment about her difficulty remembering characters in a book. Writing in The Telegraph she observed that it’s easier to turn back and check the plot and who’s who in a ‘real’ book than with a Kindle. I agree in part, although of course, in reality it’s perfectly easy to bookmark a page and search for keywords with the electronic version.

I’d also add that there are occasions when I can’t remember why I’m reading a particular book in the first place – a flick to the back cover of a paperback will tell me; it requires more effort on the Kindle.

Joan Bakewell’s comments generated a small flurry of responses, and one from Bedfordshire suggested that all books should list the characters with a brief note on each. I did once include a family tree in one of my own novels (Remember Remember – which incidentally is about dementia), although my editor didn’t think it was necessary. I’m devoutly wishing the novel I’m reading right now had just such a dramatis personae. I’m having to concentrate hard to make the connections in what is a subtle plot with lots of characters (too many beginning with ‘A’: Anselm, Augustine, Agnes, Arthur, Andrew, Aubret, Anton, Armstrong, Adolf), false trails, and a lot of zipping to and fro between the  generations. And what’s more several people not who they say, or even think they are. I mean, is it any wonder I’m confused?

The Sixth Lamentation

Published by Abacus (Little Brown & Co)

It’s The Sixth Lamentation by William Brodrick which I bought on a strong recommendation from a friend who’s read it several times. Actually if I’m honest I don’t think my difficulty is as much to do with Brodick, as to do with my juggling too many balls at the moment, which means my attention is only partially on the story that I’m reading in odd snatched moments.

Domestic crises and extra responsibilities have been vying with professional demands lately. But this week I’ve made a concerted effort to methodically tick off deadlines. So what have I accomplished? I’ve sent off the usual synopsis and first three chapters for Over My Dead Body to a potential agent; Double Trouble has gone to a film production company who’ve expressed interest in making it into a feature film; I’ve had encouraging conversations with a possible funding body to enable this to happen; and all my various blogs are up to date. Phew. A week in the life of a lowly jobbing writer.

I’m realistic – nothing may come of any of these developments, but at least my report card will read ‘Hazel demonstrates dogged persistence and works hard‘.

Maybe in two weeks’ time when my current overload is a thing of the past (now there’s a triumph of hope over experience, if ever I heard one), I can return to The Sixth Lamentation with renewed enthusiasm and perhaps this time do it justice. See, that’s where that dramatis personae would be a real boon. I’d have a head start.

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Week 2 of the Book Festival

I’ve now returned to my usual invisible self, my stint as official blogger for Genotype over, my press pass archived.

Two sessions to share with you this time. Friday morning was close to my own current preoccupations. How much responsibility should parents take for their children? How far would you be prepared to go to protect those you love? And when is it right to sacrifice the interests of an individual for the greater good?

Two books were under discussion: The Donor, by Australian Helen Fitzgerald, formerly a criminal justice social worker, working with rapists, murderers and psychopaths, (gives her a head start, huh?) and The Dinner, by Dutch TV and radio producer, actor and writer, Herman Koch. Both dark books with largely unsympathetic, unlikeable characters. Hmm. Do I like unlikeable characters?

Fitzgerald’s novel, The Donor, is billed as a ‘tense thriller’ – genres are rather elusive labels at times and I’d say this was a loose categorisation. It’s about single father, Will Marion, a passive, unproductive man whom one of his girls describes as ‘a rubbish dad‘. His teenage twin daughters are polar opposites, but both have inherited a kidney condition, which means they both need a transplant. Will has two perfectly functioning kidneys. What should he do? Naturally, given my need to read any novel on transplantation, I’ve got this one, but it wasn’t the sentimental tearjerker I was expecting. It’s set in a world of drugs and violence, crime and punishment, dysfunctional families and misplaced loyalties. ‘Gritty’ is my summary.

The Dinner deals with the sombre undercurrents that lie beneath middle-class respectability. Two very different brothers – one a teacher, the other a high-ranking cabinet minister a whisper away from becoming prime minister of the Netherlands – and their wives, are in a smart restaurant, exchanging polite but banal conversation. But behind the empty words lurks an horrific secret: their fifteen-year-old sons were together accountable for an act of terrible brutality. They weren’t identified at the scene of the crime so will the parents report them to the police, or will they protect their own reputation and careers? The actions of any one of them could affect them all.

Both authors talked about the triggers to their stories, their use of humour, how they balanced the story line with the issues – all issues relevant to me. I could usefully compare and contrast their decisions with my own. They too challenge the reader to ask, What would I do in such circumstances?

The Monday session was much further outside my comfort zone: Letting the Genome out of the Bottle. Genomics – essentially the study of all the genes of a cell or tissue at the DNA level – is a relatively new field of enquiry which has raised huge questions for society, and the knowledge it provides has widespread consequences for individuals, for families and for society.

My Beautiful GenomeThe author, Lone Frank is an internationally acclaimed Danish science writer with a PhD in neurobiology. Mercifully I’d read her book, My Beautiful Genome: Exposing our Genetic Future One Quirk at a Time, so I wasn’t completely lost during her talk, even though the sound effect of rain thundering down on the roof of the tent was rather distracting, and I was still suffering from motion sickness after almost 1000 miles on the road over the weekend.

Consumer genetics has been ‘portrayed as a panacea for the plague of diseases, a cornucopia of health and prevention – with the Holy Grail being the advent of personalized medicine, tailor-made for your individual genes.’ Frank was clear: illness is indeed an important aspect of genetics, but it’s only part of the picture. Clarity is something she aims for. And accessibility. She manages to make a complex subject engaging by taking us on her personal journey of genetic discovery. She became a research subject – no easy task given the family history of depression, mental illness, alcohol problems, breast cancer – unravelling the Lone Frank genome with all its strengths and vulnerabilities. She shares the accumulating secrets with her readers. Then, having reeled us in, she broadens the issues through discussions with an impressive array of scientists from around the world. A clever tactic.

The end result is a book that’s at once engaging, informative and intriguing. How about this for a withering aside to a pompous boss: ‘Whether you are a flu virus, a slime mold, a manatee, or a manager, your genetic code contains the same components‘? Or this to prick an over-inflated ego: ‘human beings share ninety-eight percent of their genome with a screeching chimpanzee, sixty percent with a skittering mouse, and even twenty percent with a lowly roundworm a millimetre long‘? Brilliant!

And her honesty means she doesn’t shirk the difficult questions about the consequences of biological fortune-telling. There were times when I felt decidedly genetically challenged, but I scribbled furiously, and came away with a rather reassuring picture. Consumer genetics isn’t about checking your genes for a diagnosis of specific diseases like diabetes, cardiovascular illnesses, or Alzheimer’s. Rather it’s a risk assessment; a collection of indicators that compare your chances of getting a disease against the same risk in the general population.  And if you’re fearful of knowing about your genetic underpinnings, remember ‘None of us are free of mutations and genetic weaknesses – the flawless genome does not exist.’ Knowing what these weaknesses are could potentially empower us to protect ourselves from developing those illnesses to which we are susceptible. But analysis of our genes will only take us so far. Exactly what tactics to adopt requires understanding of what turns the genes on and off – the new science of epigenetics to which attention is now turning. So we aren’t there yet. And secretly at times I was wondering if we were any further forward than the days when we simply looked to our parents and grandparents to see what we had potentially inherited.

There are though, many, many other issues to consider in this more scientific approach: privacy, questions of intellectual property, the consequences to relatives, the implications for prospective parents wanting to minimize genetic disadvantage in their children, commercial pressures, the implications for employers using these tests as part of a selection process, DIY genetic testing, surreptitious testing of celebrities, paternity testing, genetic dating … I was left reeling. There were clearly some experts in the audience – they challenged Frank to tighten up her language and thinking. No dumbing down for the uninitiated here!

But the last word has to go to Lone Frank. It was she who put herself in the firing line, exposing her own vulnerabilities for all to see, she who wrote this fascinating book, after all. Her conclusion is that her genome is ‘not a straitjacket but a soft sweater to fill and shape, to snuggle up and stretch out in … it is information that can grant me greater freedom to shape my life and my essence.‘ How comforting is that?

So, the Book Festival is over for another year. And for me it’s been one of the most enjoyable yet. Hats off to all those people who make it possible.

 

 

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Over My Dead Body

Amidst all the hurly burly of summer I’ve been trying this week to get back to the subject of organ donation and my current novel, provisionally called Over My Dead Body. Much of what I do – writing, reading, thinking, re-writing – is rather mundane and not worth reporting, but two events might interest you.

On Thursday morning Radio 4’s Inside the Ethics Committee discussed the case of an 82-year old woman who wanted to donate her kidney to a stranger: an altruistic donation. Wowwa! Steady on! Wait a minute! Would I want a rather ancient used organ myself? Worse, would I want my daughter, my granddaughter even, to get it? As a health care professional, would I say to this sparky little lady, ‘Yes, by all means; go ahead, that’s fine. Good on you.’? And should my squeamishness be allowed to trump her honourable and unselfish intentions?

It was fascinating stuff, made more challenging by my trying to answer all Joan Bakewell‘s questions to the panel of experts before they did.

This sprightly and indomitable octagenarian – Pamela, not Joan Bakewell! – had nursed her severely disabled husband for years until his death, and she’d found kidney failure a particularly distressing phase to contend with. Her husband wasn’t strong enough to have a transplant, but Pamela was determined to personally spare someone else the trauma of dialysis. At first the doctors were reluctant, but against opposition, she persisted. The medical team eventually agreed to test her fitness, and in the end she did indeed donate. And the recipient, still in his fifties, was hugely and tearfully grateful.

The panel explored issues such as: Should an 80-year old kidney go to an 18 year old patient? Should necessarily tight regulations and procedures sometimes be waived in exceptional circumstances? Should people be allowed to take big risks with their own lives? Should a doctor’s moral qualms be allowed to influence decisions? And I found the specific case really helped to concentrate the mind.

Then yesterday off I went to meet the manager of a team of staff who actually work in the business of organ transplantation in real life. And this time I got to ask the questions. As the novel I’m writing evolves, questions present and I keep a tally of the points I need to research. Sometimes the internet provides the answers, sometimes scientific papers. But there’s something really special about talking with folk at the coalface who actually do these things for real.

Boy, was I glad I’d contacted this particular expert. I learned so much, and came away with invaluable information, and additional documentation that will give me even more insights. Documents about transplantationSo, now it’s back to the draft of Over My Dead Body to correct the things that simply wouldn’t ring true in modern practice. Most of it involves minor tweaks, but one strong message I got as I listened is that there’s a deliberately wide gulf between those who deal with the donor’s side of the transplants, and those who focus on the recipients’ side. I knew, of course, that the transplant team were kept away from the donor family so as not to influence decision making, but I didn’t realise the separation is much much wider than that. I was impressed by all the rigour and safeguarding. And I now have to split my fictional medical team more decisively into two.

As always, I’m left greatly indebted to experts who authenticate my stories. And on this occasion, with an additional sense of gratitude that there are such compassionate and sensitive people out there to steer families through the greatest tragedy of their lives, and help to bring something positive out of it.

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