Mary Dejevsky: Scientists must try harder to win this debate

Share
Related Topics

Australia is currently wooing tourists with a brazen, and briefly banned, series of adverts that combine langorous shots of deserted beaches with an indignant vernacular voiceover. "So where the bloody hell are you?" it asks. I recalled this advert a couple of days ago when 200 charities and scientists sent a letter to MPs in support of the Human Fertilisation and Embryology Bill. Where the bloody hell had they been?

For a week, the Catholic Church had made all the running. The bishops had exploited the Church's unique selling point (Easter) to lobby against what they regarded as ungodly aspects of the Bill. They dominated the airwaves.

Now, I have no problem with church traditionalists defending their patch: that is what they are for. What was distressing was the pusillanimous and tardy response from those with the qualifications and authority to take them on. All too often it seems that, once the scientists have lobbied MPs via committees and special interest groups and steered "their" bill to a parliamentary reading, they think their job is done.

Let the Catholic bishops' Easter offensive be a lesson. If pioneering scientists want a larger slice of taxpayers' money and an extension of ethical boundaries, they will have to work harder to take the public with them. If they don't, they will risk appearing as obscurantist as the upper reaches of the Catholic church – and no less guilty of special pleading.

I have a personal interest to declare here. As one of the estimated 120,000 people in Britain suffering from Parkinson's disease, my husband might eventually benefit from some of the research the Embryology Bill seeks to permit. The prospect that tightly regulated experiments with cloning and hybrids might speed a cure for even some of those 120,000 thus outweighs any qualms I might have about the presumption inherent in creating hybrids.

Nor is it hard, from this perspective, to argue that scientists should be given the benefit of the doubt. In the field of neurology alone, the pace of advance is breathtaking – even to me as a reasonably informed, but definitely lay, observer. Less than 20 years ago, when my husband was first diagnosed, doctors played down heredity. Now, much of the research approved for funding has a genetic aspect.

A gene mutation was recently identified that may predispose those who have it to a particular strain of Parkinson's. Identification is the first step to being able to reverse it. And now it is reported that scientists have successfully implanted cells derived from cloned embryos into mice, greatly diminishing their Parkinson's symptoms.

Successes, such as these, are invariably lauded beyond the scientific world – which is understandable, even if there are liabilities to doing so. Excited accounts of "breakthroughs" raise hopes in sufferers and their families that are often completely unrealistic: transferring experiments from mouse to man, for instance, takes a decade or more. And gene therapy is still at an extremely early stage. Reports that suggest miracle cures are just around the corner are generally more cruel than kind.

This does not mean, however, that scientists could not be much more forthcoming than they are with the information they have at their disposal. Some strains of Parkinson's, for instance, can be helped enormously by a procedure known as deep brain stimulation. An electrode is planted in the brain that substitutes for the missing chemical and negates the tremor that is the bane of so many sufferers' lives.

This is something scientists could shout about from the roof-tops; it is being done with spectacular success here and now. Yet we hear far more about the (more distant) potential for cloning and stem cells. Could this be because these are at the fashionable "leading edge", because drugs companies see the possibility of huge profits, or because this really is where the greatest hope resides of curing what is today incurable?

This is a discussion that could usefully be held between scientists, politicians and the wider public. But how much effort do scientists make to admit lay people to the inner sanctums of their thinking, in a discursive, rather than triumphalist way? Personally, I have misgivings about the all-embracing enthusiasm for stem cell technology. Are there no scientists out there, who could maybe contribute another angle?

Perhaps, deep down, my doubts are selfish: applications of this research are so far away that my husband is unlikely to benefit. I would rather ascribe them to an inbuilt suspicion of any wisdom that becomes too conventional, and some knowledge of unsuccessful experiments.

In the late 1990s, a scandal unfolded at the University of Pennsylvania clinic, where a young man had unexpectedly died. It turned out that he was an early victim of failed – and unauthorised – gene therapy. The case drew some shocked headlines in the papers; I imagine that compensation was paid, and lessons – perhaps – were learnt.

Other misfired experiments related to the early use of stem cells to treat Parkinson's. In these cases, the implanted cells – as I understand it – had the effect of exacerbating the symptoms. Of course, not everything is always successful. But my lingering doubt relates to whether stem cells might not already conceal the "fault" that ultimately gives rise to his disease.

An easy riposte for the scientists would be to say that lay people should not worry their heads about contrary data, for a little knowledge is a dangerous thing. And they might cite a recent finding that it was the more educated parents who were most likely to refuse the combined MMR vaccination for their children. The more information lay people glean, they might conclude, the more trouble they will cause.

But this should be the absolute last conclusion they should draw. They should be horrified. For what the MMR finding shows is the dangerous vacuum that is left when reputable scientists fail to communicate.

The MMR case has acquired a special notoriety among Britain's scientists. They are at one in blaming the media for what they regard as ignorant and irresponsible reporting. Yet if they had done more to understand the appeal of Dr Andrew Wakefield's argument and the effect that their complacent silence would have, they might have behaved differently.

In matters scientific, the British public's combination of scepticism and susceptibility to simplistic argument is in direct proportion to the failure of our scientists to engage with us. To alienate Catholic traditionalists might be judged honourable in some quarters; to alienate the educated public is a scandal and a dereliction of elementary duty.

m.dejevsky@independent.co.uk

React Now

Latest stories from i100
Have you tried new the Independent Digital Edition apps?
iJobs Job Widget
iJobs General

Recruitment Genius: Finance Director

£65000 - £80000 per annum: Recruitment Genius: Finance Director required to jo...

Recruitment Genius: Medico-Legal Assistant

£15000 - £25000 per annum: Recruitment Genius: This is a unique opportunity fo...

Ashdown Group: (PHP / Python) - Global Media firm

£50000 per annum + 26 days holiday,pension: Ashdown Group: A highly successful...

The Jenrick Group: Quality Inspector

£27000 per annum + pension + holidays: The Jenrick Group: A Quality Technician...

Day In a Page

Read Next
David Cameron faces the press as he arrives in Brussels for the EU leaders summit on Thursday reuters  

On the Tusk of a dilemma: Cameron's latest EU renegotiation foe

Andrew Grice
John Profumo and his wife Valerie Robson in 1959  

Stephen Ward’s trial was disgraceful. There can be no justification for it

Geoffrey Robertson QC
Homeless Veterans appeal: 'You look for someone who's an inspiration and try to be like them'

Homeless Veterans appeal

In 2010, Sgt Gary Jamieson stepped on an IED in Afghanistan and lost his legs and an arm. He reveals what, and who, helped him to make a remarkable recovery
Could cannabis oil reverse the effects of cancer?

Could cannabis oil reverse effects of cancer?

As a film following six patients receiving the controversial treatment is released, Kate Hilpern uncovers a very slippery issue
The Interview movie review: You can't see Seth Rogen and James Franco's Kim Jong Un assassination film, but you can read about it here

The Interview movie review

You can't see Seth Rogen and James Franco's Kim Jong Un assassination film, but you can read about it here
Serial mania has propelled podcasts into the cultural mainstream

How podcasts became mainstream

People have consumed gripping armchair investigation Serial with a relish typically reserved for box-set binges
Jesus Christ has become an unlikely pin-up for hipster marketing companies

Jesus Christ has become an unlikely pin-up

Kevin Lee Light, aka "Jesus", is the newest client of creative agency Mother while rival agency Anomaly has launched Sexy Jesus, depicting the Messiah in a series of Athena-style poses
Rosetta space mission voted most important scientific breakthrough of 2014

A memorable year for science – if not for mice

The most important scientific breakthroughs of 2014
Christmas cocktails to make you merry: From eggnog to Brown Betty and Rum Bumpo

Christmas cocktails to make you merry

Mulled wine is an essential seasonal treat. But now drinkers are rediscovering other traditional festive tipples. Angela Clutton raises a glass to Christmas cocktails
5 best activity trackers

Fitness technology: 5 best activity trackers

Up the ante in your regimen and change the habits of a lifetime with this wearable tech
Paul Scholes column: It's a little-known fact, but I have played one of the seven dwarves

Paul Scholes column

It's a little-known fact, but I have played one of the seven dwarves
Fifa's travelling circus once again steals limelight from real stars

Fifa's travelling circus once again steals limelight from real stars

Club World Cup kicked into the long grass by the continued farce surrounding Blatter, Garcia, Russia and Qatar
Frank Warren column: 2014 – boxing is back and winning new fans

Frank Warren: Boxing is back and winning new fans

2014 proves it's now one of sport's biggest hitters again
Jeb Bush vs Hillary Clinton: The power dynamics of the two first families

Jeb Bush vs Hillary Clinton

Karen Tumulty explores the power dynamics of the two first families
Stockholm is rivalling Silicon Valley with a hotbed of technology start-ups

Stockholm is rivalling Silicon Valley

The Swedish capital is home to two of the most popular video games in the world, as well as thousands of technology start-ups worth hundreds of millions of pounds – and it's all happened since 2009
Did Japanese workers really get their symbols mixed up and display Santa on a crucifix?

Crucified Santa: Urban myth refuses to die

The story goes that Japanese store workers created a life-size effigy of a smiling "Father Kurisumasu" attached to a facsimile of Our Lord's final instrument of torture
Jennifer Saunders and Kate Moss join David Walliams on set for TV adaptation of The Boy in the Dress

The Boy in the Dress: On set with the stars

Walliams' story about a boy who goes to school in a dress will be shown this Christmas