An
article published in the Daily Mail, and a number of other news outlets, on 11
July 2014 highlighted how scientists may have discovered a cure for a form of MND,
with clinical trials beginning in 2015. Here I report on the science behind the
headlines.
The
main news behind this article is that the Sheffield Institute for
Translational Neuroscience (SITraN) recently received an anonymous donation of
£2.2 million to help translate their MND research from the lab to the clinic.
This is a huge amount of money into MND research and this donation will enable the
researchers to further our understanding of the disease.
Reporting
the news
Although a number of news outlets reported accurately on
the news (including the Scotsman),
the Daily Mail article received the highest attention highlighting “scientists say that they have found a
potential cure for MND”.
But why would two news outlets report the same story so
differently? It’s all down to good/bad science communication.
Daily Mail: Have Scientists found
a cure for Professor Stephen Hawking’s MND? Clinical trials as early as next
year as potential cure is discovered
The Scotsman: Scientists believe
they are close to testing a promising treatment for patients struck down with a
form of MND
The
facts
As a bit of background information, we know that
approximately 10% of cases of MND are inherited. The rest of the cases are
thought to be caused by a combination of lifestyle, environment and subtle
genetic factors.
Inherited MND cases are characterised by a strong family
history and the disease is caused directly by a mistake in a specific gene. Of
these 10% of cases, 2% are caused by the SOD1 gene (meaning that for every 100
cases of MND, 10 cases are inherited and of these, only 2 are directly caused
by the faulty SOD1 gene). To put this into context, approximately 5,000 people
are living with MND in the UK, approximately 200 of these have this rare SOD1
inherited form of the disease.
Prof Mimoun Azzouz research at SITraN was reported in a
number of news outlets, highlighting how his research is paving the way to a
treatment for a rare form of MND.
His research is at a relatively early stage, where he has
only just begun investigating the use of a technique known as ‘gene therapy’ in
mice affected by the SOD1 inherited form of MND. If the research goes to plan,
he will be able to submit a proposal for regulatory approval by August 2015. After
approval has been granted, clinical trials will then start. This does not mean ‘clinical
trials will start in 2015’ – submitting an application for approval and getting
approval, through to starting a clinical trial are very different things that
do not all happen at once!
The Scotsman rightly highlighted ‘a form of MND’. However
the Daily Mail went along the lines of ‘have scientists found a cure for
Professor Stephen Hawking’s MND?’ As you can see, from the Daily Mail article,
they’ve used the term ‘cure’. This is dangerous as unless this is the case it
can offer false hope to those living with this incurable debilitating disease.
Secondly, the Daily Mail article highlights that it is ‘a cure for Professor
Stephen Hawking’s disease’. These could wrongly be misinterpreted as a cure for
all forms of MND, or even be misinterpreted that Stephen Hawking has this exact
form of the disease and this potential treatment is solely for him – big misinterpretations
of the science.
As mentioned above, this treatment is firstly being
trialled in mice with the SOD1 form of disease, meaning if it makes it to
humans it’s only going to be beneficial for people with the SOD1 inherited form
of the disease. This is a tiny proportion of total MND cases, therefore using
the word ‘cure’ is widely exaggerated. As this treatment hasn’t been tested in
humans, there’s no evidence at present to suggest it will be beneficial.
Therefore looking at the science, the Daily Mail’s article’s is misleading and
creates false hope of a cure, whereas the Scotsman correctly says, ‘scientists
believe they are close to testing a promising treatment for a form of MND’,
highlighting how amazing this science is but without over exaggerating it.
What
is gene therapy?
Gene therapy is a bit like a car company stopping the
production of a specific type of car, huh? Well check out my blog on www.mndresearch.wordpress.com
to find out more about gene therapy and cars!
Please note the views expressed in this blog article are entirely my
own. Please note that my personal views do not necessarily reflect the views of
my employer, academic institute or PhD supervisors.
