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Making Sense of Allergies

We’ve launched Making Sense of Allergies and it’s great to see that so many people are finding it helpful, on the differences between allergies and other conditions and why some tests don’t give accurate results. Amid some excellent TV and radio discussion today though (and some not so welcome blaming of parents!) we need to think more about how to get the message out that severe food allergies should never be treated in the same way as food preferences. A blasé or cynical view of serious allergy is the last thing desperate parents need. This is what Nathalie Dyson-Coope, 'Intolerant Gourmand', says in her great guest blog below.

I ran into this myself one afternoon years ago, when I picked up my youngest from nursery. He had an egg allergy, thankfully now outgrown but at that time so severe we couldn’t fry eggs in the house. His eyes and lips were swollen. He’d been sick. It was Shrove Tuesday. ‘Did he eat egg?’ ‘Oh yes, in the pancakes, we didn’t want to leave him out so we gave him a little bit.’ Discussing it with them later I discovered that they’d become confused by parents who said their allergic children were ‘okay with a small amount’ and not very convinced by the inclusion of ‘sweets’ on their list of parent-reported allergies. This lack of conviction had unfortunately become generalized.

Over to you Nathalie…

‘Making Sense of Allergies’ by The Intolerant Gourmand

The allergy world is waking up to articles all over the news, focusing on a report titled ‘Making Sense of Allergies‘ released by Sense About Science today.

The report focuses on how allergies need to be accurately diagnosed, with proven scientific based testing. The risk of not doing this, can result in malnourishment in supposed allergy sufferers. Allergists, consultants and allergy charities have worked with Sense About Science to bring the report together.

Bogus home testing kits are being blamed as the root cause of the issue, as they have no scientific basis.

The supposed outcomes from these kits are resulting in major food groups being cut out of diets, causing the serious issue of malnutrition.

ITV’s ‘Good Morning Britain‘, The Guardian, and The Telegraph are the key articles doing the rounds this morning, with the article from The Telegraph seeming to ruffle the most feathers within the allergy world.

The tone of the article suggests that allergies are nowhere near as prevalent as believed, due to:

40% of people claim to have a food allergy, only 5% actually do’

and follows swiftly with:

‘Cutting out entire food groups because of needless concerns about allergies’

This has understandably caused a fairly substantial wave of anger for true allergy sufferers. 

In just a few short hours I have received numerous emails and texts asking what my views are, and whether it is a ‘fair’ representation. 

Any allergy parent will tell you that concerns about allergies are most certainly not ‘needless’. Watching your little ones suffer a reaction is the hardest thing to witness. Hives, wheezing, vomiting, extreme diarrhoea, eczema are all symptoms of a reaction, and not to be taken lightly. Add the struggle to breathe if entering anaphylaxis territory and it becomes terrifying.

The Guardian on the other hand has got a much more balanced and fairer handle of the situation:

‘It’s probably the biggest mess for science communication, where myths, misinterpreted studies and quackery collide with under-and over – diagnosis. The costs are huge – unnecessary actions for some and not enough action for those whose lives depend on it’ (Tracey Brown, Director of Sense About Science)

although their comment of:


‘A child who can’t eat wheat or drink milk can’t go to parties’

is totally inaccurate! Why on earth would true allergies to wheat and dairy result in being unable to attend parties? If sensible, and you plan ahead, of course a child can still attend parties, as I describe how to achieve successfully here

The article also mentions how eating out has become much more difficult. Chefs find it much harder to cater easily for allergy sufferers due to the fact that many people claim to have an allergy, when actually it is a life style choice. 

This was a very hot topic a couple of months ago with the ‘Top 100 chefs‘. Living first hand with allergies, I can see both sides. It’s not easy for restaurants to cater for allergies, but training and understanding helps enormously. Equally, it’s not easy to eat out without worrying where the next reaction will come from.

Fuel has been added to the already raging allergy fire following the comments made by Dr Hilary Jones during Good Morning Britain:


‘Don’t assume that your symptoms are due to allergy or intolerance. You can go and talk to your doctor, and if there is a clinical reason, have a blood test on the NHS. Don’t restrict or withdraw all kinds of food groups’

Oh dear, if only it was that easy!

The NHS will not give blood tests just by asking, believe me, I tried for 16 months before I was able to get them done for Callum.

As to restricting/ withdrawing food groups – when you first see your doctor and query allergies/ intolerance, the first thing you are asked to do is keep a food diary. If a pattern starts to show, you are then asked to remove from your diet. At no point is a blood test agreed to – nor any allergy testing!

Unfortunately, this whole sorry situation is most likely due to the lack of understanding, and also sadly budget, within the NHS.

It is the result of desperate parents, who are battling to get listened to! They describe their children’s symptoms, to no avail, attending doctor appointment after doctor appointment, presenting in secondary care (often as an emergency) and still don’t get anywhere.

Groupon regularly advertise ‘food intolerance testing’ at a supposed massive reduction. If a desperate parent, sleep deprived, and worried beyond belief for their little one, the chances are they will resort to anything to find some sort of solution!

The key to turning all of this around, as I have said many many times before, is to provide the NHS with the tools to fix this situation.
They need to have a bigger budget so that correct, accurate and scientifically proven testing can take place. The doctors, consultants, dieticians, nutritionists, health visitors all need to have extra training provided to them so that they recognise the symptoms associated with allergies.

I applaud the release of this report from Sense About Science. It is much needed, and gives a true depiction of what is happening within the allergy world. 

I really hope that the situation can now be improved, and that the NHS gets the support it needs to support the allergy world where it needs it most!

Find a link to Nathalie's original blog piece here.


UbbLE - trusting the public with novel research

UbbLE

At Sense About Science, everything we do works towards putting science and evidence in the hands of the public. From all of our publications, projects and collaboration with medical charities, community groups and scientists, we know there’s an appetite for knowing more about the process of science and how it all works. We encourage scientists to share their insights and to trust the public to see their research in action. This is rarely more important than when their research is based on data voluntarily provided by members of the public.

Our recent work with two Swedish researchers, Andrea Ganna (Karolinska Institutet) and Erik Ingelsson (Uppsala University) serves as a great example of when this is done well.

Calculating risk of death

The researchers, whose study is published today in The Lancet, examined data collected in the UK Biobank, a large national health resource. Between 2006 and 2010, UK Biobank collected a large number of measurements (variables) from over half a million UK volunteers aged 40-70. These measurements included blood samples, physical and biological measurements as well as carrying out detailed questionnaires.

Erik and Andrea used this data to:

1. Investigate how well 655 different variables can predict death within five years.

2. Create a Risk Calculator that can predict the risk of dying within five years for 40-70 year olds living in the UK.

Association Explorer

This research is the first to examine this many variables at once, and so each can be compared relative to others in a way that has never been done before. They found factors that can be asked in a simple questionnaire (13 questions for men, 11 for women) were better predictors than physical measures like blood pressure and BMI. For example, asking people to rate their overall health (self-reported health) and to describe their usual walking pace were two of the strongest predictors in both men and women for different causes of death.

Andrea Ganna

“The fact that the score can be measured online in a brief questionnaire, without any need for lab tests or physical examination, is an exciting development. We hope that our score might eventually enable doctors to quickly and easily identify their highest risk patients, although more research will be needed to determine whether it can be used in this way in a clinical setting.”

Sharing the findings

Erik and Andrea not only wanted to share their findings with the scientific community, but with the wider public. They created a dedicated website, UbbLE, for scientists and non-scientists alike to have access to explore their work. Knowing their findings were complex and had potential to be misunderstood, they asked Sense About Science for help. We were able to use our extensive experience over the last 12 years of working with a diverse range of civil organisations, to avoid common pitfalls. 

We held several rounds of user-testing workshops with public and medical charity representatives, as well as those working in research, science communication and policy. Their feedback was incorporated into the website to make sure the research was clearly presented, accessible and not easily misinterpreted. Emphasising that this research shows associations, not causation was a particularly priority.  

Risk Calculator

Erik Ingelsson

“We found this review process extremely helpful, and we would like to recommend other researchers to consider this before new health-related tools are introduced to the public.”

 Emily Jesper, Sense About Science: 

"UK Biobank is a fantastic research resource, which is only available because members of the public have voluntarily provided their personal information. So it's really important that the findings from studies that use these data are not only made available, but accessible to as many people as possible.”

As with all research, of course UbbLE has limitations, something the researchers themselves point out, and you can read critique from independent scientists here and here.

While not everyone will find the website provides practical advice, it does give an opportunity for people to see research in action and explore these results. We are delighted that the researchers have gone to such lengths to communicate what their research can and can't tell us, and we only want to see more of this.

For more information or tips on how to do this with, get in touch enquiries@senseaboutscience.org.

Coverage

UbbLE has been covered widely in the media, and is reported in:

The Telegraph, The Times, The Daily Mail, The Daily Express, The Independent, The Guardian, The Metro, The Financial Times, Mirror, New Scientist, Reuters, Press Association,  The Conversation and Sky News.


Superdrug lacks evidence on sperm count claims

This article was written by VoYS member Chelsea Snell

Articles making claims about what may or may not affect fertility regularly appear in print media and on the internet. One such article appeared in the Mail Online written in collaboration with Superdrug and “compiled helpful tips for optimal sperm health”. We put these claims to Allan Pacey, Professor of Andrology at the University of Sheffield and former chair of the British Fertility Society and Professor Richard Sharpe, leader of the male fertility health team at the University of Edinburgh to see what the evidence actually said.

1. Tight pants or underwear

Professor Allan Pacey: “If underwear or trousers are too tight and forces the scrotum closer to the body, then the temperature will naturally rise. This has been shown empirically by making temperature measurements, but the question is whether this is enough to affect sperm production. From the CHAPS Study, of which I was one of the principal investigators, we were surprised to see that men who wore boxers in the three months prior to semen analysis were significantly less likely to have a low sperm count. This suggests tight pants are a potential risk for male infertility, but we did not show that changing tight pants for looser ones will improve the situation.”

2. Weight

Professor Allan Pacey: “Much has been written about the potential risk to male fertility of being overweight, partly because it is relatively easy to measure and we also know that the endocrinology of overweight men can be significantly altered (for example they have higher levels of the female hormone oestrogen in their blood). However, much of the data is controversial and many studies are poorly controlled so its not clear if it is the man’s Body Mass Index (BMI) which is a problem, or some other aspect of his lifestyle which has not been measured. In the CHAPS study we measured male BMI and did not find an association with poor semen quality. So I remain unconvinced of a robust association with male fertility. However, we know that high male BMI has other effects on health and so I would agree that doctors should still advise men to try achieve the correct BMI, although I am not convinced this will have a major effect on their fertility.”

3. Drinking and smoking (cigarettes or marijuana)

Professor Allan Pacey: “Many studies have investigated the effect of smoking cigarettes, marijuana and drinking alcohol on male fertility, with mixed conclusions. The CHAPS study did not see any effect of alcohol consumption on sperm counts or morphology. With regard to cigarette smoking, however, we know from several studies that smoking cigarettes or marijuana can damage sperm DNA and therefore, in theory, can reduce the chance of conception. The CHAPS study showed that men who smoked marijuana were more likely to have reduced sperm count, but again it did not investigate whether stopping improved the matter. However, for other health reasons I would say smoking of anything should be avoided.”

4. Sunscreen

Professor Richard Sharpe: “Evidence that octinoxate, a key ingredient of sunscreens, can affect sperm production and hormone levels comes from one animal study that used exposure levels far, far higher than would ever occur during normal use as a sunscreen. Not using a sunscreen would be far more likely to cause you harm.”

5. Water bottles and frying pans

Professor Richard Sharpe: “We are all exposed to very low levels of Bisphenol A (BPA) and perfluorinated compounds (PFC) due to their widespread use in everyday products. Some studies have shown associations between this exposure and altered sperm number or quality in men. However, not all studies show these associations and none show that the exposures cause sperm changes. Animal studies suggest that effects would only occur if we were exposed to very much higher levels than we are normally exposed to.”

6. Mobile phones in pockets

 

Professor Allan Pacey: “In my mind, the jury is still out concerning the relative risks to male fertility of mobile phone use. Many of the studies which have been conducted to date are of relatively poor design and do not adequately take account of other lifestyle factors that men have. Moreover, most men do not expose their ejaculated sperm to mobile phone radiation because their sperm are stored in the testicles which are some distance from the phone and surrounded by connective tissue, muscle and skin. Finally, for most men an 8.1% reduction in sperm motility is probably meaningless and is also within the day to day variability of most laboratories performing the test. I will be continuing to keep my iPhone in my trouser pocket!”

Final Word

Superdrug has put together some rather smart looking graphics and included a seemingly impressive list of sources (apart from the inclusion of a Fox News magazine article). Yet the conclusions Superdrug arrives at are different to that of Richard Sharpe and Allan Pacey (who's research is actually included as a source).

We've contacted Superdrug to ask them to work with us and male reproductive health researchers to amend the site and turn it into a genuinely useful resource. As Professor Allan Pacey says, “We need to be really careful about how we interpret claims concerning what does and does not affect semen quality and in turn male fertility. Although suggested risks are often taken from the conclusions of scientific papers, these are often cherry picked from different designs of studies which are not easily comparable, or easily translatable into the general population.”


If we want evidence-accountable policies, stop bashing MPs

Evidence in policy making was barely a discussion before the last election. That has changed, and not just on the subjects of climate change or crime, where politicians have made evidence the debating point for a while. But while Whitehall’s discussions about running policy trials and finding out what works are being celebrated, the research community regularly despairs of Westminster, of the low number of scientists there (likely even fewer after 7 May) and of the dreadful stories about how some of the members and committees treat evidence. Today our survey of MPs with Ipsos MORI shows they’re wrong to despair.

Nearly seventy per cent of MPs support or strongly support the use of randomised controlled trials to design and test social policy. Around half think that more trials of policy are inevitable. Few (just 9%) think the cost of RCTs is a barrier.

Should we be surprised by this? Yes and no.

Yes, because RCTs are clearly quite difficult to understand, beyond the initial proposition of testing policy. The survey, and the tentative nature of the views it captures, also shows that MPs in general lack confidence and knowledge about what is involved in trials. Around a third think that ‘randomly choosing’ who gets an intervention is unfair, while two-thirds support the use of pilot studies without control groups - experiments which still depend on groups not getting the intervention yet give less robust results. But that is not a cause for ridicule - it's an opportunity that the research community must leap upon.

And no, MPs’ positive attitudes to policy trials shouldn't actually be such a surprise – Westminster is supposed to hold the executive (Whitehall) to account. ‘Does it work?’ ‘What is the evidence?’ should surely be up there with ‘are you telling the truth?’ and ‘did you do as you promised?’ as questions they can ask of government. We should be fuelling and championing this happy congruity between their constitutional role and our questions about evidence in policy.

What is more, the Ipsos MORI survey – conducted face to face with MPs - also reminds us that ‎MPs have far greater experience of mediating policy issues with the public than many in the research community. They speak in human. While they rated research evidence high among the list of inputs they believe are most important for developing policy, 70% said they have used personal experience and constituents’ concerns to justify policies. Taken together these responses suggest sensitivity both to expertise and evidence, and to the human terms in which evidence and decisions need to be communicated. (The public’s preference for research to be communicated with vivid stories emerged in a study in 2014 by Ipsos MORI and the Royal Statistical Society in 2014.)

So instead of despairing of the lack of scientific research knowledge in Westminster, the research community needs to concentrate on how better to explain the benefits of randomised controls. They are, after all, the closest thing a politician will ever have to a magic wand. And as my colleague Chris Peters explains on the Ask for Evidence website, when voters start asking the MPs returned on 7th May about evidence they will be reminding those MPs that this is more than an esoteric concern of research design: it is an essential part of holding government to account on behalf of the rest of us.


Can your DNA predict what you look like?

On 30th January 2015 the Mail Online reported that forensic experts can use a person’s DNA to predict their eye and hair colour, freckling and the shape of their face.

The technique is called DNA phenotyping and uses genetic ancestry information from DNA to predict physical characteristics. The Mail article showed images from a US company that suggested using information from a person’s DNA, researchers could generate facial reconstructions for use in forensic police work.

DNA Phenotyping (C) Parabon Nanolabs

Dr Matthias Wienroth from the Northumbria University Centre for Forensic Science told us that “Determining face shape using DNA analysis is still at an early research stage, as many genes are involved. Analysing ancestry-informative markers is an emerging technology that can provide estimates of a person’s genetic ancestry rather than clear-cut information on the appearance of a person. This technique provides indicators for appearance based to some extent on our cultural expectations about, for example, the appearance of a person with Northern European ancestry compared to a person with East Asian ancestry. This is not the same nor as informative as analyses that use other genetic markers to provide information about a person’s externally visible characteristics such as face shape, eye or hair colour.”

The US company claims it can use as little as 0.05 nanograms of DNA for its tests, but Dr Wienroth says this “is probably a little ambitious for now, however, efforts are made – as part of so-called ‘next generation sequencing’ – to achieve analysis sensitivity to that level.”

Dr Wienroth concludes:

“Whilst DNA technologies for externally visible characteristics are at different stages of development, with hair and iris colour being the furthest along, they should be used with care so that investigators don’t expect a ‘photo-fit’ (as implied in the article by the use of the term ‘e-fit’). An article in the FT Magazine from 30 January emphasises that information about a person’s appearance, and on their genetic ancestry would only provide police with 'intelligence leads' rather than information than can be used as evidence.”

For more on this, read our guide: Sense About Genetic Ancestry Testing.