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Obesity, dog packs, dating delusions & WTAF!

26 Tuesday Jun 2018

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So just a quick sojourn into some of the things that have beggared belief this week (in my tiny mind at least).

First up on the No-shit-Sherlock-o-meter:

Plus Sizes increasing propensity for obesity. Well, I never. Who’d have thought that telling morbidly obese people that ‘Fat is where it’s at’. ‘Bigger is beautiful’ and ‘be your big gorgeous self’ would inspire people with a potentially life-diminishing weight problem to eschew any kind of reflection on their consumption, and the nature of why they eat the way they do and just crack on with the triple, super-size tortilla melted cheese, ‘quarter pounder with sleaze’ approach to a dietary regime. And just to top it all off: remove any sizing that points to comparative sizing and markers that potentially might make them ‘feel bad’ about themselves or by which they feel ‘judged’ – thus normalising unhealthy body weights. I understand how one would not want people who ‘struggle’ with their weight to be pariahs in the zero-size eating disorder tyranny of current fashion trends. A bunch of leaf movers tucked into clothes designed for prepubescent boys evading any form of proper nutrition in pursuit of their beach ready body is bad enough. But really? Have we really become so meek? If we have put on too much weight. Call it. Accept the truth. We wouldn’t do this with an alcoholic.

Second up. Suing a dating company for not delivering a rich husband forward slash man of my dreams forward slash potential father. Christ on a bike. What on earth a perfectly intelligent and purportedly mature person thinks will be the outcome of suing a business that peddles ‘perfect love with a minted bloke’ I am not quite sure. I suppose it may eventually stop them from also hiring out the Tooth Fairy and getting the Silver Fox dating monopoly on Father Christmas in future – as they obviously see fantasy product promises and experiences as their forte. How do you sue someone for a fantastical promise? I am really curious. I would love to see the contractual terms – the legally binding document that will have them bang to rights for selling the impossible. However fragile we might be at any given time, have we really descended into a moment where this is regarded as a realistic possibility? All I wonder is…where were her friends?

Thirdsies, the gang culture that celebrates 20 people ganging up and chasing down a lone teenager and stabbing them to death and then claiming bragging rights. What for? A towering demonstration of group cowardice? Top rating for the International slimy Hyena Gold Star? I’d love to see the youtube channel video where these people set out their manly credentials. It probably appears alongside like-minded videos that celebrate Baby Kicking, stealing the wheels of a Paraplegic’s wheel chair and Pregnant Woman Slapping. Is there no-one, even in the utterly toxic and twisted world of gang culture and male uber-violence, to point out that this is not a brag. It’s a pitiful demonstration of the most cowardly kind of attack.

Anyway, that’s it. Bored myself.

So, I’ve popped on my ‘slim look’ kaftan and I’m off to tuck into a Man vs Food scale twenty-stack Burger & Doritos ‘salad’ with triple-Ceasar dressing at the Single Women Seeking Minted Dream Blokes Night at 5 Grand a pop – with a police escort. Wish me luck.

A New Deal on Data.

20 Wednesday Jun 2018

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Articulating the contract between science and people

By Anna Middleton1, Vivienne Parry2, Julian Borra3

ARE YOU WITH US?

For most of us it is hard to unpick the various declarations, assurances and guarantees made regarding the sanctity of our data. Even the General Data Protection Regulation still feels quite far removed from the everyday lives of ordinary people and is seemingly absent of any consultation with them. People need to both see and hear proof that they’ve been listened to. And they will act against anyone who seems to wilfully dismiss or disregard them – with every right to do so. With Facebook recently under the spotlight, there is tangible alarm about the use of our personal information by others. A breach of confidence or inappropriate access to data becomes really sensitive when we consider our most precious and personal information. In a health sense, what is more personal than our DNA? It’s what makes us ‘us’.

We broadly know that scientists, clinicians and academic institutions collect, store, research and share DNA and medical information as part of the global endeavours to understand human health and treat human suffering. As part of this endeavour DNA information bounces around the Internet on an unbelievably massive scale, in ways unknown to the person who donated the data.

We probably expect ‘science’ is gathering, storing, analysing and sharing our data with respect, transparency and integrity. Whilst we hope that there is choice in this and we hope that we have actively consented, have we ever really discussed this as a collective society? Is this even possible?

Is it widely known that particularly for genetic research it is only possible to interpret what a glitch in DNA means if there are hundreds of thousands of DNA glitches from other people to compare it to. So, Big Data and DNA go hand in hand and are necessary for genomic medicine to deliver on its promises.

But, if science is truly going to serve humankind in the best way possible we need to be clear on the terms of the interaction and transaction with people, on their terms. And to do that we need a simple and clear conversation; to be certain that we can fulfil their demands or at least understand their desires and concerns.

The need for a PEOPLE POWERED conversation

THE WHY?

A. The world of data is leaky.

B. Society’ hasn’t yet been part of a clear conversation.

When thinking about A. we have to be honest. Nothing is perfect. No data is 100% secure. No system is flawless. No regulation is absolute. No cache of information is 100% bullet proof – and if anyone promises that, they’re over promising.

This is a given that we have got to accept.

The type of data we are talking about here is the purest most precious kind, fundamental to our identity and existence. DNA and linked medical data – the foundational stuff that makes us who we are. Whilst our data might be ‘de-identified’, i.e. our name and address has been uncoupled from it, ‘anonymity’ cannot be absolutely guaranteed, because health information can always be linked to other personal information that is also on the web, and in our increasingly data-connected world, it is entirely feasible that we could, in theory, be identified from our DNA alone.

Which brings us to the B.

There are a lot of companies and regulatory bodies that broadcast commitments and assurances about data use. But as there has been no collective societal ‘sign up’ – so the pronouncements and commitments could be seen as one-sided. Aside from (relatively small scale) targeted engagement initiatives, there hasn’t yet been a global two-way conversation. No complete consultation. No reciprocity. No serious voice given to the most important people and the principal recipients of the good works undertaken with their data.

This is especially problematic when it comes to trying to get more people to share their precious DNA – their genome – to advance medical research and progress healthcare. Which is why the scientists need to ‘go first’ with starting this conversation.

THE CRUNCH

To move forwards we need:

  • the medical, clinical and academic institutions and the policy makers to clearly articulate the assumptions behind ‘people’s best interests’ and make this available for debate.
  • society to accept the tiny risk inherent in sharing their data with individuals, organisations.

We need the people on both sides to be in this together – mutually accepting and supporting the power of precious data sharing to make life better.

GOING FORWARDS

Drawing up the New Deal

Simplicity is key. Two clear parties. Two clear beneficiaries. And equally mutual rewards.

Consultation

This is a reciprocal people-powered deal that brings both sides together for better. And the people’s voice must be consulted, heard and written into it.

This will require a comprehensive consultation process involving ordinary people from all walks of society.

This should involve Qualitative and Quantitative explorations and interrogations of the topic and the terms of the deal. It should involve experts in large-scale, population engagement techniques.

How do we start the conversation?

We need a starting point for that conversation – an ‘in’; and starting with the genome isn’t it. We know from our own research that the vast majority of the broader public have not yet encountered the term. However, more than 90% of the public are online and feeding their data into the grid. Thus ‘data’ is the conversation starter that can take us to DNA.

The binary algorithms that once sat invisibly inside tech tools that serve humanity –- have now become visible – data has become a ‘thing’. Something we can point at, hold up, scrutinise and hold accountable. Data and its big brother, Big Data, are now discussed, interrogated and judged everywhere from the Senate Commission to Mumsnet.

So, Data; our relationship with it; and with those who harvest, explore and administer it ‘on our behalf’ gives us a rich area from which to begin.

The conversation needs to focus on how science and humanity collaborate and win, together.

Communication

Language and Tone are everything. Pub and school gate rules apply (i.e. it can be discussed anywhere and everyone can participate). This is a People Powered Deal. Not a Protocol.This is a simple deal that respects and honours every human’s right to control their own data destiny. And confidently go into an agreement where they believe that the terms will be upheld to the best of everyone’s ability. Which means it must be couched in clear simple terms.

Distribution

We need the New Deal to be visible to all at every level. This will require a robust channel strategy – so we would also need to test best channels for spreading the word. And answer some pretty simple questions: Is it an event based news worthy event? Is it a web based platform for commitment with visible partners? Is it a socially driven call for better – a clarion call where we give the New Deal to the people and get them to use it as a lever to agitate for better – a movement.

 

We feel it is time for science and policy to scrutinise their direction of travel – with less rhetoric about the benefits of research and delivery of science (i.e. going in one direction from them to us) and more about serving humankind, recognising that we are all in this together. We, collectively are a partnership and we need the people of society to feel they sit with the scientists so that the journey into human discovery is one made together.

 

1Head of Society and Ethics Research, Wellcome Genome Campus, Cambridge

2Head of Engagement, Genomics England, London

3Citizen, Founder of Thin Air Factory, London

 

DELETE A short film idea about mobile living, the death of memory & why we keep what we keep.

19 Sunday Jan 2014

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NOTE: STORY/FILM IDEA ORIGINALLY CREATED AS A PIECE OF STORYTELLING DROPPING OUT FROM THE TOPIC OF DISCARDED TECHNOLOGY – By Julian Borra©2012 

ELEVATOR PITCH – In a sentence: Memento on Mobiles – How machines murdered memory & identity. 

DELETE

WE OPEN ON A BLOKE, AN EVERYDAY BLOKE. HE’S IN A BED BUT HE’S DRESSED. HIS CLOTHES ARE A MESS. HE LOOKS LIKE HE SLEPT IN A SKIP AND HERE HE IS, IN AN EXQUISITE LOFT APARTMENT SOMEWHERE. EGYPTIAN LINEN. DUSTBIN SCENT.

He’s foggy, wooly. Unsure and half awake. 

He starts to quietly wail. He looks suddenly wide-awake and terrified. He makes the physical shape of a small creature trapped in a corner of life.

He is wild eyed. Something is wrong something is terribly terrible wrong. He looks around desperately.

There are picture frames. Many picture frames – in all the unusual and haphazard random shapes and styles you get in a home – but every one is empty.

His hands run around his half standing body – a wallet in his back pocket reveals nothing – it is worn – lived in but empty of everything and anything.

He looks down. His bare feet are crusted and smeared with old blood.

He stumbles towards what he believes is a bathroom adjoining the room. He frantically opens all the cupboards. Nothing. No medication, no shampoo, no bin with old cotton buds and tissues – nothing to make this place – human.

He stops. He looks at himself in the mirror. His eyes search his face. He moves his have draws his hand over his chin, scruffs his hair, tears at his face. We start to realise that he has absolutely no idea who he is – who the fuck IS HE?

He opens and closes the mirror cupboard – his face appearing and disappearing – as if trying to jolt his mind into remembering who he is.

We see his feet as he paces across the floor. As he walks he touches furniture; trying to connect – nothing. He walks down some open plan stairs.

He looks in draws – filled with the bric-a-brac of living but nothing – not one thing held a sense… …of someone… …anyone… …any… … identity

The windows reveal nothing. He could be in a truck by a river next to park in a market town underground – anywhere.

His eyes alight on a half open door. He senses more than sees a large space beyond it. He walks towards and then after a beat through the doors. He is in a large loft apartment styled space. The space is empty. Except for one thing. A piece of furniture? He moves towards it. At the far end: a large chest of drawers

He walks towards it as if drawn towards it – by something. No voodoo. Just something

He slows as he reaches it.

Something in it makes him feel apprehensive.

He touches the wrought metal handles. He runs his fingers across the surface. The wood, walnut perhaps, inlaid with mother of pearl. He fingers the handle and then curls his fingers slowly under it, just the tips. He pulls. The drawer slides elegantly out – this is a very, very expensive item.

He looks in. His gaze is met by what seem like dozens of bits of tech. They are mobiles – mobiles of every style and hue and age. There are mobiles in cases and with trinkets, old palms, crackberries, i-phones, motorolas, nokias HTC’s …Jesus.

He picks up one of the more recent models – couple of years old – he flips it. It’s charged. But phones lose charge? Why’s a two-year-old phone charged? He flicks through it.

No signal – no call logs – no message logs – gallery! – gallery?

There’s some files in the gallery. Pictures, random pictures of places; they mean nothing to him…and a woman…he stares. Nothing.

Up here? Down there? Nothing he feels nothing when he looks at her – she is mad and distracted – in the next, she’s reading in a café.

There’s a film file. He hits play. He can see the woman playfully avoiding the film maker. It’s not in this place. It’s a hotel place – somewhere cool and foreign. A hand comes in from the film maker gesticulating to her. She gives the camera the finger. The disembodied hand gestures. She disappears and the film follows her. As we turn the corner she is right in front of us – creepy – staring. She’s not laughing anymore: she smashes her fist at the lens and the film cuts.

A small fizzing feeling slides across his sternum, up his neck and glides across the right side of is face. A small tremor: was it actually a twitch, fires in his left eye.

The random hand in the film wore a large and quite avant-garde ring on the thumb of the right hand.

The hand he is holding the mobile with. His finger traces a faint shallow but very present impression on his thumb, the inner ridge of skin slightly rougher, coarser  – the worn edge of where a ring might once have rubbed and rolled and sat.

Suddenly he frenetically scrabbles through the drawer looking for anything, something to explain who the FUCK HE IS….

He picks up phone after phone: every one. Fully charged. WTF! Now. Where is he NOW.

He grabs what he thinks is the most recent model. He pops the button. Glow, sound signature, mix up. Interface. Gallery. Shit interface. Where’s the gallery. No gallery. Messages? Messages. Picture messages. He scrolls through it. There are hundreds of them. ALl kinds of crap. Girl. A girl. No. He looks closer. Its her. The woman. But she’s younger. So much younger.

He scrolls further. An older couple. Her parents? His parents?

A very sharp pain traverses his skull as a thought crosses his mind. Synchronicity.

He checks the model. He checks the previous model. He knows models. 

The model the old her is on: thats weird. Its older than the model the young her is on.

His face fizzes and buzzes again, louder this time.

Stupid tune. Stupid tune. In his head. Not in his head? Wheres the stupid tune? Tune’s in the drawer. The drawer is ringing.

He starts to tear at the mass of mobiles. Which one’s ringing?

Two stupid tunes? No three. Three tunes.

He steps back. The whole drawer vibrates now.

Every phone starts to ring. Too many stupid tunes.

And one voice.