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A pill to cure Alzheimer’s!?: Why science stories should be reported more carefully

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On October 10th 2013, there were headlines on the front pages of several British papers claiming that “A simple pill may cure Alzheimer’s”. These papers included the Times (£) and the Independent, who both put the stories on their front pages, the BBC website and breakfast show. The story was also tweeted by these outlets as well as America’s Fox News:

As a scientist who has worked on Alzheimer’s disease, headlines like this always provoke my cynical side. I’ve seen stories proclaiming a cure many times before, yet no cure is forthcoming. My cynicism was somewhat rewarded when I researched the story further. The study did indeed find that a pill, which inhibits a protein called PERK, was able to prevent brain cell death in mice which showed symptoms of disease. However, the disease the mice had was not Alzheimer’s; they had a prion disease.

In order to understand the research, here’s a quick explanation. Prions are misfolded, infectious proteins which are linked to neurodegenerative diseases such as BSE (or “mad cow disease” as it was known in the 80s) and CJD in humans. Alzheimer’s is also caused at least in part by a misfolded protein, called amyloid-beta (Aβ). Both prions and Aβ are affected by something called the Unfolded Protein Response (UPR) in cells. The UPR detects the misfolded protein and stops the brain cell making any new proteins. This means that the cell cannot make proteins which are essential to its survival and so will eventually die, leading to neurodegeneration.

Don’t get me wrong, the results from the study are promising. However, the newspaper headlines are incredibly misleading. There are some key problems with interpreting the research as a “cure for Alzheimer’s”:

mouse

    • This study only theoretically applies to Alzheimer’s disease as the authors note that Aβ is subjected to the same UPR as prions. The effects of the drug will need to be tested on Aβ before any definitive conclusion can be made about its effectiveness in treating Alzheimer’s. Furthermore, Alzheimer’s disease has other contributory destructive mechanisms not related to the UPR which also need to be assessed. The same is true before a link can be made to the other neurodegenerative diseases mentioned in the paper, such as Parkinson’s or ALS.
    • The research was conducted in mice rather than humans and there is no guarantee that the drug will be usable in humans. It may not have the same effects or the side effects may render the drug unusable.
    • The drug causes potentially serious side effects in mice such as mild diabetes and weight loss. This would have to be rectified before the drug can be administered to humans which could take a significant amount of time.
    • The weight loss side effect in mice means that they could not be used for a long time and it is unknown what the long term effects of the drug are. Something which targets both the brain and an essential cellular process such as the UPR may have detrimental effects if used over a long period of time.
    • The pill does not “cure” memory loss. The mice that were treated with the drug did not regain memories which were already lost. However, treating these mice did prevent the disease from progressing further. This pill will not help people who already suffer from mid to late-stage dementia.
  • Even if the drug is suitable for use in humans, it will have to go through clinical trials before being put to regular use. This will take years, possibly even decades.

Most of the newspapers covering this story did mention some of these problems. The Independent in particular made it very clear the study was in mice and a cure is “a long way off”. (However, in their tweet (above) they say that, “This breakthrough in treatment for Alzheimer’s could very soon pave the way for a simple pill to cure the disease.” showing the differences in these types of news communication). The Express, on the other hand, took seven lines to even mention that the study was in mice. Unfortunately, in this day and age, many people don’t read further than the headline, sub-heading and possibly the first two or three paragraphs.  Many people therefore may well get the impression that a cure for Alzheimer’s is imminent and misunderstand the point of the study.

Later on in the day when things had calmed down a bit many newspapers did write editorials (for example in the Independent and the Guardian). These mostly highlighted some of the points above and clarifying that there is still a long way to go in curing Alzheimer’s.  But this is after the damage had been done, the headlines had been seen and the tweets had been sent. The point is that the story should never have been given so much prominence in the first place.

It’s quite easy to assess how people are reacting to a story by use of Twitter. A quick search of “Alzheimer’s” on the day the story broke showed a lot of people re-tweeting the story from various news sources, some with a link, some without. The misleading nature of the headline can be seen by the nature of some of these tweets, including one which said “They’ve found a cure for Alzheimer’s. This is big”. One of the big tweeters was the comedian Jimmy Carr, who tweeted this (rather lame) joke:

With no link to the story, how are people supposed to know where he got the information from? Another problem with today’s microblogging news delivery system is that there isn’t a lot of room for details and so the story can easily get mutated.

There were some expressing cynicism. The Alzheimer’s Society stated “This is a promising development as it shows this biological pathway is a potential target for new treatments.  However, it is important to note that this study was carried out on mice with prion disease and so it is not clear how applicable it is to humans with diseases such as Alzheimer’s.”

But it’s not the users of Twitter who I am concerned about. The problem with misleading story reporting like this is the effect it has on sufferers of the disease or their relatives. The reason this particular story has got me angry is because I have seen the effects that this sort of reporting can have. Long-term readers will be aware that my grandmother suffered from Alzheimer’s Disease, which took a huge toll on my grandfather.

I still clearly remember a day when a national tabloid newspaper carried the headline “Vaccine for Alzheimer’s Disease!” My grandfather read the headline, turned to me and said “Does this mean they’ll be able to cure your grandmother?” My cynicism piqued, I read the article and had to gently tell him no. That story held many of the same points as this one; it was a study done in mice and no human trials had been conducted. It is five years later and there is no news on that subject; whether it failed at clinical trials or is still being tested I don’t know. But the false hope it gave to my grandfather, and the countless others who read these headlines and think their disease may be cured soon, is a sad and dangerous thing.

newspaperWho is to blame for this misinformation spreading? It’s probably a subtle combination of the scientists who wrote the paper, the journal who published it and the reporters who wrote the newspaper stories. For scientists, having work published in national newspapers is a huge coup; national reports result in interest in your work and so you’re more likely to secure funding  to continue with your groundbreaking research. Unfortunately, newspapers and by extension their readers will mostly respond to “interesting” stories, which translates to “treating a disease that people have heard of”.

Alzheimer’s is big news now, as it is predicted to affect 1 million people by 2021. Therefore, the scientists probably put Alzheimer’s as the key point of the findings to increase interest in their research. This is a common practise amongst researchers desperate to secure funding from a dwindling pot. I noted when researching this post that every single headline said the more evocative “Alzheimer’s” rather than “Parkinson’s Disease” or “ALS” which were also mentioned in the research paper as potential beneficiaries of the drug. Curiously, CJD isn’t even mentioned by the researchers as a disease which can benefit from the treatment despite being the best-studied prion disease in humans. However, CJD is much rarer than Alzheimer’s (causing 1 death per 1-2 million of the population) and the media storm that happened around it in the 90’s has died down. It is not a “sexy” enough disease to sell research or newspapers on such a grand scale.

How is this problem going to be solved? Is it possible to make research interesting if it’s not linked to a disease? I would like to think it would, but them I’m biased. It’s a real bugbear for me as a biologist that an “interesting” story about biological research has to be about curing a disease. Research which just explains how a system works can be fascinating.

Certainly taking out a small, speculative point and blowing it up to the key part of the story doesn’t work.  However an accurate headline such as “There’s a drug which prevents brain cell death in mice that have something similar to Alzheimer’s disease; won’t be used in humans for a decade or so” is hardly catchy. But it should be made crystal clear in the very first reading points of the article exactly what has been found and its relationship to the disease; the authors and journalists at least owe that to the people affected. As a reader, it’s probably best to take headlines involving the words “cure” and a deadly disease with a pinch of salt until you’ve read the full article. Unless they involve the words “repeated successful human trials” then it’s probably best to treat the information with caution.

Post by: Louise Walker (in rant mode)

Excellent scientists that you probably haven’t heard of

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There are some scientists that everyone has heard of; Darwin, Newton and Curie all spring to mind. Of course, their scientific discoveries were all legendary. But what about the people who have contributed just as much to the world of science but who maybe aren’t so famous? Here I’ve compiled a small list of some of the scientists I think have contributed just as much to our understanding of the modern world as those mentioned above. Although many of these people have been recognised in their fields and some have even won Nobel Prizes, their names have never entered the wider public consciousness.

1.       Rosalind Franklin (1920 – 1958) and Maurice Wilkins (1916  – 2004)

http://commons.wikimedia.org/wiki/File:DNA_Helix_CPK.jpg
The Structure of DNA. http://commons.wikimedia.org/wiki/File:DNA_Helix_CPK.jpg

Whilst Franklin and Wilkins are probably the best-known names on this list, they are not as well-known as they should be.  The discovery that DNA is a double helix is now forever associated with (James) Watson and (Francis) Crick. However, there were other names involved in this remarkable achievement, including Wilkins and Franklin who were working at King’s College London at the time of the discovery. Maurice Wilkins even shared the 1962 Nobel Prize with Watson and Crick, yet somehow his name has been lost from the public consciousness. His student was Rosalind Franklin, whose work with X-Ray diffraction was the key to confirming that DNA is indeed a double helix. Much has been made of Franklin not winning the Nobel Prize along with Watson, Crick and Wilkins. But, the sad fact is that the Nobel Prize is not awarded posthumously and by the time the discovery received this honourable recognition she had sadly passed away – at the tragically young age of 37. However, what I believe to be even more scandalous, is that her contribution seems to have been entirely overlooked until a few years ago when the deserved recognition began to flow in.

As for Wilkins, Watson himself states in his autobiography ‘The Double Helix’: “I proceeded to forget about Maurice, but not his DNA photograph”1. There is no doubt that the work done by Wilkins and Franklin was instrumental in aiding Crick and Watson with their ground-breaking discovery and their names certainly deserve to be remembered!

2.       George Gey (1899 – 1970)

Stained for lysosomes (green) and DNA (blue). Photo credit: Louise Walker, 2011. (This is from the very beginning of my PhD. Which is why is rubbish. Well, I'm not going to use a thesis-quality one, am I?)
HeLa Cells. Stained for lysosomes (green) and DNA (blue). Photo credit: Louise Walker, 2011.

Although he is a figure of some controversy, I think George Gey (pronounced “guy”) deserves to be on this list. Gey was the first person to propagate the HeLa cell line – the first human cells to be successfully grown in a laboratory environment. Since then, scientists have used HeLa cells, and other cell lines created since, to make many important breakthroughs, including the discovery of a treatment for polio. And they are still used in thousands of labs across the world, including mine (see picture).

The controversy surrounding Gey2 is the fact that the HeLa cells were taken from a cervical cancer patient, Henrietta Lacks, without her permission. Gey did not ask Henrietta or her family for permission to use or distribute the cells. The cell line was later patented and has made those who patented it (incidentally, not Gey or his family) very rich. Henrietta’s family received no money for the use of her cells, and until recently, Henrietta’s contribution went unacknowledged. George Gey however, did not have such financial motives; once he managed to successfully grow the HeLa cells, he gave them away to fellow scientists.

Whilst controversy remains as to how much money the Lacks family should be entitled to, I like to remember George Gey; the man who started it all out of altruism with no financial motives, a quality that should be admired.

3.       Sir Edwin Southern (1938 – )

Showing the protein Tsg101 after elution from a gel filtration column, if you're really that interested. Credit: Louise Walker, 2011
A Western Blot. Showing the protein Tsg101 after elution from a gel filtration column, if you’re really that interested.
Credit: Louise Walker, 2011

Here’s one for fellow biochemists. Edwin Southern is a British molecular biologist and inventor of the Southern blot. This is a method for detection of DNA, now commonly used in DNA fingerprinting and genetic profiling. The Southern blot was later developed into the cleverly-named Northern Blot – modified to detect the other form of genetic material, RNA. Even better, the development of the Southern Blot finally led to development of the Western Blot – a method used to detect proteins. These methods are probably used by every biochemistry lab across the world, including mine (see picture).

The Southern blot and its offshoots have become staple practices in the lab and have made way for many important discoveries. Yet I know few biochemists who have even heard of Edwin Southern or his contributions to the scientific methods they use on a daily basis.

4.       Dorothy Crowfoot Hodgkin (1910 – 1994)

Credit: http://commons.wikimedia.org/wiki/File:Insulin.jpg
The Crystal Structure of Insulin Credit: http://commons.wikimedia.org/wiki/File:Insulin.jpg

Another British scientist, Dorothy Hodgkin, won the Nobel Prize in Chemistry in 1964 for discovering the structure of vitamin B12. She was a pioneer in the field of X-Ray crystallography, working on solving the crystal structure of proteins. Her knowledge was instrumental in the discovery of the structure of several proteins, but arguably her greatest achievement was in leading the team that solved the structure of insulin. This discovery led to the development of synthetic insulin – now widely used to treat people with type I diabetes.

Hodgkin has been recognised for her work in the scientific community. Along with the Nobel Prize she was also the first woman to win the prestigious Copley Medal. Some of her fellow recipients include Charles Darwin and Stephen Hawking. She was a true pioneer, not just for women in science but also for promoting peace and aid for developing countries. (According to her Wikipedia page, she did teach Margaret Thatcher, but I guess nobody’s perfect.)

While you could argue that most of these names are well-known in scientific circles, they have not become household names along with the likes of Darwin and Hawking. And this is by no measure an exhaustive list!

Perhaps one of the most endearing qualities of great scientists is that they rarely do what they do for fame or fortune. In fact, many actively shy away from the limelight. People like George Gey and Dorothy Hodgkin were certainly more interested in curing disease and adding to our understanding of the world than earning money or becoming famous. So this is just my way of thanking them for their tireless work and recognising the contributions they have made to modern science.

Post by: Louise Walker

1 The Double Helix by James Watson, Simon and Schuster, first published 1968

2To find out more about Henrietta Lacks and George Gey, see The Immortal Life of Henrietta Lacks by Rebecca Skloot, Pan MacMillan, 2011

News and Views: The importance of vaccination

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NeedleThere has been a story in the news recently about a measles outbreak in Swansea and certain other areas of Wales. The cause of this outbreak is attributed to a lack of children being vaccinated with the controversial Measles, Mumps and Rubella (MMR) jab. This measles outbreak highlights the troubled relationship between the general public and vaccination.

The drop in numbers of children receiving the MMR jab can probably be traced back to a 1998 news story. A paper was published in the journal The Lancet stating there was a link between the MMR jab and cases of autism and bowel disease. The study was led by Andrew Wakefield, a former surgeon. Wakefield claimed that instead of the single MMR jab, a vaccination should be administered in three single doses, one for each disease.

However, there were several major problems with the science in the paper. No other scientists could identify the link between the MMR jab and autism that Wakefield and his team claimed. Investigation by the journalist Brian Deer also revealed that Wakefield had a “conflict of interest”, in that he was being paid by a law firm trying to prove that the MMR jab was harmful. This should have been declared to the Lancet, but wasn’t. Therefore his motives appeared to be more financial than scientific1. Eventually after a large, long hearing Wakefield was struck off the medical register in 2010.

A greater problem has arisen from all this. However dishonestly Wakefield behaved, his original claim was never that “all vaccinations are bad”. He claimed that one particular vaccine had a (disproven) link to disease.  However, it appears that some people have become generally mistrustful of all vaccines and worry that they all cause serious disease.  For example Michele Bachmann, a US congresswoman contending for the Republican nomination for president in 2012, claimed that the HPV vaccine led to mental retardation. This statement was not based on scientific evidence or due to any research on the HPV vaccine; she was quoting a parent who had also made that claim without any actual evidence. Other people, including celebrities, both here and abroad, have begun to claim links between some vaccines and diseases which have never been scientifically proven. This had led to a multitude of preventable illnesses and deaths because people are unsure about whether to be vaccinated or not.

Can vaccines be harmful? They do sometimes contain “attenuated” or less virulent versions of the disease-causing microbe to stimulate the immune system. This could theoretically lead to a person who is vaccinated getting the disease instead if the virus reverts to virulence. However, vaccines are rigorously tested before being administered, so any side effects can be detected and assessed before it enters the general population. If the side effects are too bad or the vaccine is not effective enough, it will not be administered. Occasionally things can go wrong, but the prevention of these diseases generally outweighs the risks of using the vaccine.

The media has apparently made little attempt to rectify the public’s mistrust in vaccines. Whilst the original story about the link between MMR and autism was blasted across the front pages of the national papers, the subsequent retraction of the paper (in 2010) and Wakefield’s dismissal have not been as heavily reported. This means that people still have a vague remembrance that “vaccinations are bad” and are not being vaccinated because the story has been poorly clarified. Unfortunately, this has led to several outbreaks of measles, as well as other diseases such as whooping cough that can be prevented by vaccination.

It is important that as many people get vaccinated as possible. When enough of the population is vaccinated against a certain disease, the spread of that disease is limited. This protects people that have not, or cannot, be vaccinated. This concept is known as “herd immunity” but, for it to be successful, a large number of the population need to be vaccinated. This is called the “herd immunity threshold” and may need to be up to 95% of the population to be effective.

I’m not suggesting that you should get every vaccine which is available. However, if you or someone you know is due to have a vaccine and you’re worried, ask your doctor (and get second opinions) about potential side effects or the importance of the vaccine. It is important to make an informed decision about whether to be vaccinated or not based on scientific and medical evidence rather than hysterical celebrities or a retracted paper.

1 Reference: http://www.bmj.com/content/342/bmj.c5347 and references therein

Post by: Louise Walker

NEWS AND VIEWS: Standing Up For Science – Improving the relationship between science and the media

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Historically, scientists and journalists have never really got along. In general, scientists tend to be a little … mistrustful of the ability of a journalist to accurately portray their research to a wider audience. In return, journalists may find that scientists can be difficult to work with. The research the scientists present can also be a bit confusing or complicated. But they need each other. Scientists need journalists to get the message about their research across, and newspapers like to print science stories  because their readers are interested in it.

Knowing that the science/media relationship can be somewhat antagonistic, the charity Sense About Science has set up a series of workshops as part of their “Voice of Young Science” section. The aim is to help foster a better relationship between early career scientists and the journalists that report scientific stories. These workshops encourage scientists to stand up for themselves and their subject by responding to misinformation or dubious claims in all kinds of media.

I was lucky enough to be able to attend the recent Voice of Young Science media workshop at The University of Manchester. The day was split into several panel discussions; the first involved scientists discussing their experiences with the media – both good and bad – and advising how to get the best out of their situation. Amongst the speakers was Professor Matthew Cobb, from the University of Manchester, one of the advisors on the BBC’s recent “Wonders of Life” series (this counted as one of his “good” experiences!). Professor Cobb’s main advice was to “Just say yes”, because nothing will happen if you say “No”. It may not turn out as well as you’d hoped, but the experience will still be valuable.

It’s easy for scientists to be scared about the way their results may be interpreted by the media. These fears are illustrated by a horror story from another panel member, the evolutionary biologist Dr Susanne Shultz. Dr Shultz had discovered an evolutionary link between social animals and increasing brain size over time, as opposed to solitary animals, whose brains had more or less remained the same size. A misunderstanding somewhere along the line meant it was reported that she had discovered that dogs (as a social animal) were more intelligent than cats (as a solitary one). These were not her results, meaning she had to repair quite a lot of damage. However, whilst Dr. Shultz had a horrible time dealing with misinterpretation of her research, she didn’t think it had done permanent damage to her scientific credentials, which was a relief to hear.

Another panel consisted of people on the media side of the equation, including the science journalist David Derbyshire, as well as Radio 5 Live producer Rebekah Erlam, and Morwenna Grills, the press officer for the Faculty of Life Sciences here in Manchester. There was a sharp intake of breath when Derbyshire admitted that he has written for certain tabloids which are not particularly well-regarded for their science reporting! However, he raised some very good points that I’ve never thought about before. The one that stuck with me was that the turnaround time for getting a story into a newspaper is incredibly short. You’ve got to investigate the story, track down those involved, write it and send it off, sometimes in the space of a few hours. This is not an ideal situation, as scientific stories in particular need proper research to make sure you thoroughly understand it, and this takes time. But what do you do if that time is not available to you? And if your piece is sub-edited into something different, is there a lot you can do about it?

The thing that struck me most about the workshop is that scientists and journalists really need to communicate with each other more effectively. Without journalists reporting on scientific matters, scientific research would never reach the public consciousness; and when you have an important message to get across that would be a very bad thing. Scientific breakthroughs are usually of great interest for the general public, whether it’s about a potential cure for cancer or horsemeat in our burgers. It should ideally be a trusting relationship for both sides to get the best out of the arrangement, and at the moment it is inherently the opposite. The good thing about workshops such as this one is that it helps each side see the situation from the other’s point of view; I certainly feel a bit more understanding towards science reporters. Hopefully the journalists on the panel feel more sympathy towards scientists and why they can be quite protective about their work. Perhaps more events like this can help to heal the rift between these two opposing factions.

For more information about the Voice of Young Science media workshops, please go to: http://www.senseaboutscience.org/pages/workshops.html