Sunday, November 22, 2015

The World in 2016

Hot off the presses. Get your copy, all good newsagents etc. I have a piece in the Science section on cancer in 2016. Some outstanding contributions in this issue. 

The right to be forgotten

While I was working in America for a few years, the EU passed an interesting law known as "the right to be forgotten". I'm not an expert but my understanding is that one can apply to have results about yourself removed from EU Google Search pages. My feeling about this law is mixed. I get that some people struggle with moving on from their lives after they've had some awful experience and want to use the law. Perhaps they are having trouble finding employment. Equally, I understand that there is a debate between the right to be forgotten and the public's right to know.

Yet the law is also pretty pointless in many circumstances because it does not apply in the US. Anyone using it who is subject to even a tiny bit of scrutiny would face the potential embarrassment of someone highlighting the difference in search results about them on different continents.

In other words, if you quietly apply to have something removed, and someone notices that it has been removed, then this can be highlighted to embarrass you! Probably wouldn't look great for a journalist to use this either. It would look like they were trying to rewrite history!

This evening I was searching for something I had written on the internet. I searched under my name and up popped this curiosity:

Odd. Because I've not asked for anything to be taken down.

But it very much like someone else has though. I asked a friend to do a search in the US and what seems to be missing is some articles about me being detained at a Mitt Romney rally in 2012. (Anyone who is eager to read this can find the most prominent link on a US search here. There are a few quibbles I have about the piece, I'm not highlighting it because I'm trying to brag, I just want to be clear that I've not applied to have this piece hidden from sight.)

I'm going to try and find out some more about how these search results were adjusted and report back. In the meantime if anyone knows any more about how the process of being forgotten works and whether it is open to misuse by third parties, please do get in touch. There is definitely something interesting going on here.

Update: a colleague tells me that EVERYONE in the EU has this under a Google search so that people who have had things removed don't look like they are. Ooops! Is this right?

Friday, August 28, 2015

Editing humanity

This is our cover story about CRISPR editing. My colleague Oliver Morton was instrumental in pulling the package together. 

There is a leader (op-ed):

Genetic engineering
Editing humanity

A new technique for manipulating genes holds great promise—but rules are needed to govern its use
Aug 22nd 2015 | From the print edition

THE genome is written in an alphabet of just four letters. Being able to read, study and compare DNA sequences for humans, and thousands of other species, has become routine. A new technology promises to make it possible to edit genetic information quickly and cheaply. This could correct terrible genetic defects that blight lives. It also heralds the distant prospect of parents building their children to order.

The technology is known as CRISPR-Cas9, or just CRISPR. It involves a piece of RNA, a chemical messenger, designed to target a section of DNA; and an enzyme, called a nuclease, that can snip unwanted genes out and paste new ones in. Other ways of editing DNA exist, but CRISPR holds the promise of doing so with unprecedented simplicity, speed and precision. [More...]

A four page briefing:

Genome editing
The age of the red pen

It is now easy to edit the genomes of plants, animals and humans
Aug 22nd 2015 | From the print edition

IN THE summer of 2005 Karen Aiach and her husband received heartbreaking news about their four-month-old daughter, Ornella: she had a rare disorder known as Sanfilippo syndrome. The prognosis was that, from about the age of three, the disorder would gradually rob her of most of her cognitive abilities. She would probably develop a severe sleep disorder and become hyperactive and aggressive. She was unlikely to live into her teens; she certainly would not survive them.

The problem was that Ornella lacked a working copy of a specific gene. It is a gene that tells the body how to make a particular protein which is involved in clearing up cellular debris. Without that protein the cells of her body were unable to break down a complex sugar molecule, heparan sulphate. It is the build-up of that molecule in brain cells that lies behind the symptoms of the syndrome. If her cells could make that protein, the situation might, in principle, be reversed. Learning this, Ms Aiach embarked on a ten-year search for a way to correct the error in her daughter’s genome.

In almost every cell in Ornella’s body, as in every human body, there are two copies of the human genome, one from her mother, one from her father. In each of those genomes there are about 20,000 genes, each of which contains the recipe for a specific protein in the form of a sequence of chemical “letters”. To date, medicine has recognised about 6,000 diseases that can be traced to a problem with one or another of those genes—a disorder in which a missing or garbled sequence of DNA leaves the body unable to make a particular protein, or causes it to be made in an abnormal form. Some of these single-gene disorders are well known: Tay Sachs; sickle-cell anaemia; haemophilia. Others, such as Sanfilippo syndrome, are the sort of thing you learn of only when a child you care about turns out to be the one in 70,000 that it afflicts. [More...]

A podcast:

Babbage: August 19th 2015

Climate's wild child
A new technique makes editing the human genome much easier and this year's El NiƱo, a disrupting climate phenomenon, could be the strongest ever. 

Thursday, July 23, 2015

Publishing medical trials

This week's edition of The Economist has a couple of pieces on the need to make sure that all medical trials are published. The campaign by AllTrials in the UK has made great inroads on this issue already but now investors are signing up because they realise that lost data could be affecting the way they value companies. The first piece is a leader (op-ed).

Drug testing

Trials and errors

The evidence base for new medicines is flawed. Time to fix it

Jul 25th 2015 | From the print edition

WHEN patients are prescribed a drug, they might assume it had been subject to the closest scrutiny. They would be wrong. The results of about half of all clinical trials are never published. Companies are allowed to run many tests and publish only the ones with results they like. Unsurprisingly, negative results are far less likely to appear in public.

Regulators can see the results of every trial. But that provides only so much comfort. Officials may well be convinced that a particular drug has enough value for a few patients to pass the bar for approval, but that does not tell doctors whether the drug is better to prescribe than other treatments. And the regulators have limited resources. They cannot match the sort of scrutiny that comes from making all trial results public. Independent evaluations were important in raising concerns about the heart-attack risks associated with Vioxx, a painkiller that was recalled in 2004.

At best, this bias in published results has produced a polluted evidence base. Patients have been prescribed antidepressants that look much less effective when unpublished data are taken into account. The British government’s decision to stockpile antiviral drugs in case of a flu pandemic looks less clever now that previously unpublished data have called their efficacy into question. At worst, the skew has caused demonstrable harm. Some patients may have died because data about potentially dangerous side-effects were not published; volunteers in clinical trials may have suffered harm for no reason.

Clinical trials

Spilling the beans

Failure to publish the results of all clinical trials is skewing medical science

Jul 25th 2015 | From the print edition
I’M THE one who looks the patient in the eye and tells them the trial is beneficial,” says Tim Crater, a research physician at the Hutchinson Clinic in Kansas. Dr Crater runs drug tests for large pharmaceutical firms. He says volunteers are interested in more than just the promise of payment. “A lot of people want to help, they are altruistic to a certain degree and want to advance science.” Dr Crater’s experience is typical. Those who participate in trials often believe that they are, in a small way, contributing to the advancement of medicine and that any suffering on their part will help others.

Unfortunately, this is not always the case. Though pertinent trials carried out by companies do have to be reported to those responsible for licensing drugs and medical devices, there is no obligation on firms to make them public. That means such trials cannot be scrutinised by outsiders. The licensing authorities look at them, of course, so anything approved should, in theory, be safe, and have at least some beneficial effect. But the practitioners who go on to use them do not know all the details.

Some estimates suggest the results of half of clinical trials are never published. These missing data have, over several decades, systematically distorted perceptions of the efficacy of drugs, devices and even surgical procedures. And that misperception has sometimes harmed patients.

Saturday, June 27, 2015

Now seriously... in praise of Connie St Louis

In the past few days an esteemed journalist and teacher I know called Connie St Louis has come under sustained attack for reporting what happened at a meeting she attended. She was by no means the only journalist at the meeting who heard the sexist remarks of Sir Tim Hunt, but she is now in the cross hairs for reporting what she heard and saw.

Of the many things that happened subsequently, one was that Sir Tim resigned from his position at UCL, an honorary unpaid position. Yesterday UCL issued a statement explaining their decision to accept and why it was necessary for Sir Tim's resignation to be accepted even if the remarks were meant lightly:

"..Equality and Diversity is not just an aspiration at UCL but informs our everyday thinking and our actions. It was for this very reason that Sir Tim’s remarks struck such a discordant note.....An honorary appointment is meant to bring honour both to the person and to the University. Sir Tim has apologised for his remarks, and in no way do they diminish his reputation as a scientist."

Sir Tim has also rightly apologised to the Korean women scientists who he offended. One might think that this would be the end of it. But no. The Times (London) has already made one attempt to discredit the original report by citing a non-verbatim report that seemed to contradict the original reporting (it didn't). Then the Daily Mail tried the same sort of trick again, but that didn't work. 

Now the Daily Mail is trying a more direct approach, hatchet job on Connie. Make no mistake, the Mail has decided to destroy her reputation, even though she was doing nothing more than her job. She did not orchestrate the Twitter monstering of Sir Tim. It is completely untruthful to say that Connie hounded Sir Tim out of his job. 

On the upside, The Mail seems to have got its knickers in a twist over something easily understood. which is that her university uploaded an outdated CV into its information system when they were running a pilot. None of this has any bearing on the fact that a Nobel winning scientist put his foot in his mouth. 

Connie has the strongest moral fibre of any journalist I know. I worked with her as Chair of the Association of British Science Writers, and I was thrilled that she took over, and then was elected, to head the organisation after I stood down.  She was an excellent leader, and garnered great respect for her work at that organisation.  She is kind, overly generous with her time and a truly great lecturer and teacher. City is lucky to have her on staff. 

Over the years, I've been a bit cynical about science journalism degrees. I used to wonder if academic courses were truly necessary to teach young journalists. I was proved wrong by Connie, particularly as technology has advanced so rapidly, her skills as a leader, journalist and human being have convinced me that she has something really important to teach the science journalism students of tomorrow. Now, more than ever, she has a critical message. It is this: speaking the truth to authority is a hard. It is also a hard and personally difficult journey for any journalist. 

Thursday, June 25, 2015

A media strategy for Tim Hunt....

For a while, oh maybe a day or two, I actually felt a little sorry for the scientist Tim Hunt. He was eviscerated in a classic but actually hilarious Twitter reaction to his offensive remarks about women scientists. Here is the thing, if they were not a joke then the Twitter reaction was surely fine. But if they were a joke, then why can't Twitter joke back?

Even if his remarks were off the cuff, a joke or honest... or whatever other line we have been fed, being offensive is offensive--even if you hoped it might be funny. Many of us have been there, the solution to a bad joke is pretty obvious when you think about it.

Imagine for a second the remarks were about race instead of gender and began with a line saying how odd it is for a racist to be invited to a talk make some remarks to black scientists. He might think it was funny. But that wouldn't make it so.

Dr Hunt's job was simple, he was invited as a Nobel scientist to give a talk give some off the cuff remarks to Korean women scientists. That presumably means saying something about how great a career science is, that how although it can present challenges for women who may struggle to maintain an unbroken publication record, that they have to keep pushing because they have so much to offer e.g Doudna & Sharpentier.

Instead it was Fail. Fail. Fail. The only thing to do in the face of being called out on this is to apologise straight away for being such a twit and move on. On no accounts should one give a half-hearted apology, be amazed that the furore continues, and then give whinging interviews about how bad YOUR life is.

Anyway now the Science Empire (no names no pack drill) has circled the wagons and decided to defend Dr Hunt, and now we have to put up with the embarrassment of The Times making another strike for the Science Empire, in the form of a leaked Euro "report" that says it was a joke all along. (Cue calls for reinstatement).

You know what I think? I think this is all nonsense and the idea that it was somehow reported wrong from a conference of science journalists would be laughable if it wasn't so serious. So, in a bid to end the hoopla, free of charge, here is my five point media plan for Tim Hunt.


1. make a sincere statement of regret about his comments, acknowledge they are divisive whether or not they were a joke.

2. If asked whether they were honest or a joke come up with some sort of consistent and logical explanation*. (E.g. How about he says he was being honest about the fact that he is a chauvanist and that he was trying to see the light-hearted side of this, and he now sees that this wasn't helpful and actually pretty dumb. That might explain being honest and joking at the same time. But either way, refer to point 1.)

3. Shut up

4. Oh, before shutting up, he should ask his friends in the Science Empire, such as Darth Dawkins Vader to shut up as well because the are doing him no favours and just making things worse.

5. That is it. (Refer to point 3.) **

It will all blow over in a month or three and you'll be able to go back on all those committees again as if nothing happened. Key point though, refer to no 1. And if anyone asks you about that event in Korea, refer to no 1 again. All a mistake, terribly sorry. Do not be tempted to revise or downgrade the apology, by claiming you were misquoted, just accept no 1 as the new reality because the remarks were stupid in the first place whether or not you think your stupidity was fairly reported.

* Handy pro media tip: think about this carefully before you open your mouth. Try it out on a few friends first for internal consistency and maybe in front of the mirror.

** Handy pro media tip #2: summarise these points on a piece of card and keep it handy. Front of flash card: Apologise. Back of flash card: Shut up.

Monday, June 15, 2015

Price of drugs

Pharmaceutical pricing


Jun 4th 2015, 15:09 BY N.L. | CHICAGO

THIS week health insurers have begun revealing proposed rate increases to their health-care plans for 2016. These potential hikes, which in some cases exceed 30%, can be partly explained by the fact that insurers low-balled their prices in the early days of the Affordable Care Act in order to gain market share. But there is another reason: higher drug prices. Prescription drug spending increased 13.1% in 2015.

This rise is partly explained by some new drugs for Hepatitis C. More trouble is on the horizon. At the annual meeting of the American Society of Clinical Oncology (ASCO) in Chicago this week, scientists announced that new immuno-oncology drugs work in a wider range of cancers, and even better when given in combination. The problem is that these drugs are some of the most expensive the country has ever seen.

“These drugs cost too much,” said Leonard Salz, an oncologist at Memorial Sloan Kettering Cancer Centre, in a high-profile speech at the meeting. At $295,000 a year, the price of combination therapy is unsustainable, he explained. At a big drug-sponsored conference, this was like swearing at a vicar's tea party. The fact that the bad news about prices somewhat eclipsed the good news on cancer treatment was an irony lost on no one. And the problem of drug costs is expected to only get worse as Americans get older and fatter and the rates of cancer go up.  [More...]