BBC BLOGS - Newsnight: Susan Watts

Archives for May 2010

Death of haemophiliac campaigner Haydn Lewis

Susan Watts | 18:25 UK time, Friday, 21 May 2010

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Haydn Lewis, the haemophiliac campaigner who featured in a number of films on Newsnight, died this morning (Friday 21/5).

He would want me to point out that, in a timely development, a freedom of information request he had been chasing for years came through on Thursday. Haydn was told about it.

Haydn wanted to see a letter from 1990 from the-then Chief Medical Officer, Sir Donald Acheson, to Kenneth Clarke, who was then Secretary of State for Health.

This was when the government faced litigation from the haemophilia community over their infection with HIV through contaminated blood products.

The letter could prove an important missing piece in a puzzle Haydn had been putting together for years. The Information Commissioner's ruling came through yesterday - that these papers should now be disclosed, and that the Department of Health (DoH) breached the freedom of information act in its handling of this request.

The DoH now has 35 days in which to release the letter, or appeal.

Haydn died disappointed that Gordon Brown felt unable to take up an invitation to visit him, to learn about how widows of haemophiliacs often struggle to make ends meet.

Here you can see Haydn talking about this issue in his last appearance on Newsnight:

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And the rest of the haemophilia community has yet to see how the new government is going to respond to this issue.

An early sign will be how they handle a court ruling, shortly before the election, and after Haydn's last appearance on Newsnight. That ruling found in favour of composer Andrew March, also a haemophiliac. He challenged the Labour government's position over compensation in the UK, as compared with that in Ireland, and won.

Haydn had developed liver cancer following infection with the Hepatitis C virus. He had survived a liver transplant, but the cancer returned. It's hard to imagine the strength of character that drove him.

Not only was Haydn also living with HIV and the likelihood that he had been exposed to vCJD, he also lived with the knowledge that all of this was the result of contaminated blood products aimed at treating his haemophilia.

These were given to him by the National Health Service, in the 1970s and 80s, under successive governments.

Haydn wanted to understand what went wrong, and he unearthed more about this than pretty much anyone, and did so not just for himself but for scores of other families he knew who were, and are, in a similar situation.

He was a walking encyclopaedic guide to the thousands of government documents in which officials, scientists, doctors and politicians revealed how thousands of haemophiliacs became infected just like Haydn.

All the more remarkable then that Haydn became the generous man who will be missed by so many people from today.

He and his wife Gaynor struck me as more like a teenage couple, than a team married for 35 years with two sons and a grandson, on whom Haydn doted.

They were a remarkable pair. Haydn had inadvertently infected Gaynor with HIV, yet their bond was strong. They were hardly ever out of each other's sight.

Haydn was very funny, and giggled with a sometimes childish sense of humour. I spoke to him often, and he was always positive.

I'm glad we managed to speak on Tuesday, when he chuckled about having a foot massage in the hospice in Cardiff near his home. He also told me he was tired.

I'll miss Haydn. He had become a friend as well as a reliable and informed advisor.

Haydn was only 53. He had a lot more to give.

Assessing the impact of Venter's 'synthetic life'

Susan Watts | 18:23 UK time, Thursday, 20 May 2010

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Building a life form in the laboratory - piece by piece from DNA building blocks - is as groundbreaking as it sounds.

And this is just what the American scientist, Dr Craig Venter, has announced on Thursday evening.

Dr Venter is the controversial scientist who famously developed a "short cut" for decoding the human genome a decade ago.

And the creation of his synthetic microbe is being compared with Dolly the sheep in genetics, and Microsoft's operating system in computing.

"Synthetic life" is new science and a new technology rolled into one.

The aim is to create a whole new biological toolkit - organisms with artificially added DNA instructing them to exude cleaner oils, or novel drugs or vaccines.

Dr Venter has been promising this for years, and now that he has succeeded we'll be hearing a lot about how he has "created life in the lab".

It's not quite that - not yet - but it's close.

Dr Venter and his team built "Synthia", as their new life form is nick-named by some, from snippets of DNA called "cassettes".

But he is still relying on a naturally-occurring microbe to act as a host - with its own DNA stripped out.

Don't misunderstand me. What Dr Venter has done is incredible science. I've already heard it described as Nobel prize-winning, "landmark", work.

But there is always an element of razzmatazz surrounding Dr Venter's research that makes it harder to sift fact from hype.

It will certainly raise the profile of a whole new field of science Synthetic Biology - less than decade old.

Filming at the Royal Society this morning - where coincidentally they were hosting a meeting on Synthetic Biology, a portrait of Charles Darwin gazed down the corridor towards the library.

I wondered what he would make of the discussion among a couple of dozen of today's brightest scientists and thinkers - gathered to ponder the latest in Synthetic Biology.

They are in no doubt that the potential is there for a new industrial revolution.

Dr Venter's microbe is just the start. Others will be inspired to build on it.

This is how Dr Venter sees his team's success: "This is an important step we think, both scientifically and philosophically. It's certainly changed my views of the definitions of life and how life works."

But just as Dr Venter unveiled his work, the critics lined up to call a halt.

There are calls for a moratorium until society can better understand the implications.

And even some of the scientists who work in the field have told me they worry that we lack the means to weigh up the risks such novel organisms might represent, once set loose in the real world.

They are by definition so new that we cannot simply compare them with the risky microbes and pathogens we know about.

Should scientists remain 'on tap not on top' in politics?

Susan Watts | 15:10 UK time, Thursday, 13 May 2010

This morning, as the first Cabinet of the new government took their seats, David Willetts we learned, has been handed the science brief.

"Two brains", as he's often nicknamed, steps into a lively discussion. Science is in the midst of a process of self-examination.

How science relates to politics, the media and the public is the all up for discussion.

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"Climategate" helped to precipitate this, but it has been coming for a while. And as scientists work out how they should best engage with the new government, there's been much talk of the need to stress the uncertainty at the heart of what they do.

The theme emerged again on Tuesday evening, during a lively discussion after the recording of the first of this year's Reith lectures.

This took place in central London, at the same time, and just a few streets away from where Gordon Brown was resigning as prime minister and the new coalition government was taking shape.

Some think scientists should champion a return to the idea of science as a process of systematic doubt.

Chris Rapley, director of the Science Museum, put it another way when we grabbed a quick chat at the pre-Reith lecture reception: "Perhaps we scientists ought to get back to our knitting" - that is, leaving the politics to the politicians.

It's a subject I have touched on before in this blog. A knowledge of science will become increasingly important as the 21st Century progresses - yet we have a new government and a new parliament with frighteningly little scientific background or expertise.

The hot topics of the day demand that politicians know the questions to ask, and who to ask them of.

The US oil spill is just one example. Is this yet an environmental "catastrophe" or still only an "incident"?

One oceanographer - Simon Boxall, of Southampton University - told me this morning that in terms both of the volume of oil released and of impact, this leak has yet to enter the rankings of the world's top 50 worst oil spills.

And there is much uncertainty ahead. Capping a well at these depths is an unprecedented technological challenge. In the long term, drilling a "bypass" into the well should work, but BP and the teams of engineers working on this do not know when they will stop the leak, how much oil will be released before the well is capped, or the likely long-term ecological impact.

Plenty of room for doubt there then. And making clear what science does NOT know, as well as what it thinks it understands cropped up in the Reith lecture itself.

This year's lecturer is Lord Rees - president of the Royal Society, Astronomer Royal and all-round widely acknowledged very clever person.

Lord Rees is familiar with the tensions that arise when scientists advise politicians: "It's crucial to keep 'clear water' between the science on the one hand, and the policy response on the other," he said. "Risk assessment should be separate from risk management."

Lord Rees cited Winston Churchill's refrain that scientific advisors should be "on tap, not on top", but it seems he only partly goes along with that:

"It is indeed the elected politicians who should make decisions. But the role of scientific advice is not just to provide facts to support policies. Experts should be prepared to challenge decision-makers, and help them navigate the uncertainties of science.

"But there's one thing they mustn't forget. Whether the context be nuclear power, drug classification, or health risks, political decisions are seldom purely scientific. They involve ethics, economics and social policies as well. And in domains beyond their special expertise, scientists speak just as citizens."

Some feel this represents too meek a view of the role of science, and that scientists need to be much more forceful in their discussions with politicians.

Lord Rees pointed to the area where he believes science has recently had the most contentious policy impact, and where the stakes are highest - climate change, one of the subjects of his second lecture.

There has not been much room for doubt and uncertainty in the climate change debate, and some are arguing that it illustrates the need for a new relationship between science and politics.

Doubt and uncertainty are the bedrock of science, but scientists often complain that that is not what politicians want to hear.

Professor Lisa Jardine, chair of the Human Fertilisation and Embryology Authority, spoke up on Tuesday evening about the difficulties scientists face when the public and politicians want to know the "right" answer to their questions, and they want to know NOW.

Lord Rees' answer?

"We have to make people realise that science has limits, and that some key questions are not yet solved."

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This year's Reith Lectures start on BBC Radio 4 on Tuesday 1 June at 0900 BST and on the BBC World Service on Saturday 5 June at 1800 GMT. It will also be possible to listen again online, read transcripts and download the podcast from the Radio 4 Reith Lectures website www.bbc.co.uk/reithlectures.

UPDATE AT 1812BST: Re comment below: Yes clumsy phrase, have changed to "science as a process of systematic doubt" - thanks.

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