Category Archives: Journalism

Who names diseases?

REMEMBER the Naples Soldier, the vicious flu pandemic that swept the globe almost 100 years ago, infecting one in three people and killing up to 50 million? You probably don’t, but you might remember the Spanish flu, the name by which that pandemic is better known. ‘Naples Soldier’ was what the Spanish called it, after a catchy tune that was being played in local music halls at the time. They knew the origins of the disaster lay beyond their borders and, understandably, refused to take the blame…

This essay first appeared in Aeon on 23 May 2017. To continue reading, click here

The Pope and Huntington’s disease

FRANKLIN Soto will develop Huntington’s disease (HD), a lethal genetic disorder that causes progressive mental and physical deterioration and for which there is no cure. His two sisters already have it. His wife died of the disease last year, and his three-year-old daughter has a 75 per cent chance of developing it.

Franklin’s was among a number of South American families who travelled to Rome this week for an audience with the Pope. The Pontiff thus became the first head of state and major religious leader to mention HD, which is thought to affect nearly one million people worldwide. The actual prevalence of the disease is unknown, because families often hide it, and are forced to live in fear and isolation far from the treatment and support they need.

The irony is that it was families from Lake Maracaibo who contributed to the research that led to the identification of the gene responsible for HD in 1993. As a result of that breakthrough, a diagnostic test now exists that means that those at risk can determine whether or not they will develop HD. If they carry a mutation in the gene in question, they will certainly do so, but usually not until middle age. This allows them to make informed decisions with respect to parenthood, to gain access to specialist treatment, and to plan for the future – all options that were unavailable to Franklin.

Hence HDdennomore, as the initiative to bring the South American families to Rome was called. The brainchild of former war reporter and HD advocate Charles Sabine, organised by an international team of HD clinicians and scientists, and funded in part by drug company Teva – which is conducting research aimed at developing new HD therapies – its goal was to lift some of the stigma attached to the disease.

“We all very acutely feel the debt that is owed to those families in Maracaibo,” said Ed Wild, a neurologist and HD researcher at the National Hospital for Neurology and Neurosurgery in London.

“You are precious in God’s eyes, and you are precious to the Church,” Pope Francis told the families. The organisers hope that this message, uttered by the head of the world’s largest non-governmental healthcare provider, will mobilise efforts both within and beyond the Catholic community to provide better care for those affected, while giving patients and their relatives the courage to come forward and be counted – and to continue to take part in clinical research.

We all stand to benefit from their participation, since HD shares disease mechanisms with other, more common neurodegenerative diseases, such as Alzheimer’s and Parkinson’s. That research could therefore lead to drugs that will help the one in three of us who will likely develop dementia in our lifetimes.

This was not in the Pope’s speech, however. He merely called for more compassion towards those suffering from HD and from all rare, genetic diseases – words that have been a long time coming, but that needed to be said.

This article first appeared on the Catholic Herald website on 19 May 2017

The tantalising truth about twins

MY godson George, aged eight, is a non-identical twin. He’s not alone. That’s not a gag from #kidswritejokes. He obviously has his twin William to keep him company, not to mention their younger brother Henry who, as George put it, “would have been a triplet if Mum hadn’t put him in a special fridge”…

 

This article first appeared in The Telegraph on 5 August 2016. To continue reading, click here

Racism after race

IN a famous series of experiments conducted in the 1970s, social psychologist Henri Tajfel asked how little it would take to persuade one group of people to discriminate against another. The answer was almost nothing. Having assigned boys to two groups based largely on random criteria, he asked them to play a game. Each boy had to decide how many pennies to give to members of his own group and to members of the other group. Tajfel found that the boys were more generous toward their own group, even though the groups had been defined almost arbitrarily. Thus was born the concept of the “minimal group…”

BLACK AND WHITE: a new exhibition at the Musée de l’Homme in Paris asks visitors to confront their own prejudices. This “category cylinder” highlights the psychological tendency that people have to classify others into discrete categories © ATELIER CONFINO

This article first appeared in ScienceNews on 14 May 2017. To continue reading, click here.

Identity crisis

 

WHAT is the essence of you? What is it about you that makes you, well, you? These are no mere academic questions for armchair philosophers, but practical ones with real consequences.

Take a police artist sketching a suspect from an eyewitness description, or a profiler writing up the behavioural idiosyncrasies of a particular “perp”. These representations become tools in criminal investigations that often lead to arrests. If they fail to capture the essence of the person being sought, the wrong person may be arrested…

Eight attempts to define Dominique Lambert

 

This article first appeared in New Scientist on 8 April 2017. To continue reading, click here.