• ABOUT

thinairfactoryblog

~ A topnotch WordPress.com site

thinairfactoryblog

Tag Archives: Culture

A New Deal on Data.

20 Wednesday Jun 2018

Posted by Thin Air Factory in Uncategorized

≈ Leave a comment

Tags

Anna Middleton, big data, Collaboration, Consultation, Culture, DNA, GDPR, Genetics, Genomics, Genomics England, Health, Healthcare, Humanity, innovation, Julian Borra, lifestyle, people powered, Precious Data, Science, society, technology, The General Public, Vivienne Parry, Wellcome Sanger Institute

shutterstock_589327709.jpg

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

 

Movie houses, memories & the illumination of negative city spaces.

15 Thursday Jun 2017

Posted by Thin Air Factory in Uncategorized

≈ Leave a comment

Tags

Absence, Art School, buildings, Culture, Fleshy Data, London Underground, Look Up, Marble Arch, memory, No.73 Bus, Observation, Overground, redevelopment, urban regeneratio, urban Sprawl, youth

Screen Shot 2017-06-15 at 10.14.50.png

There’s something quite remarkable about street level living.

And when I say street level living, I don’t mean the standard fare we trot out when we talk street life – about street food, pavement culture, busked music, tagging, midnight city walks, clubbing and vibrant multiculturalism. The stirred, slash cut, jagged, muscular, rippling, colourful, odorous, fusty, littered – the fierce and the free.

Nor do I refer to its profoundly saddening counter-culture cousin of the bleak stained streets, the shadows of humanity; the homeless and the abused propped in its doorways. The runaways, drop outs, drug addicts, alcoholics, despondent, broken, fragile – the lonely and the lost

When I say street living I’m talking about the act of living in a city at street level – the relentless act of passing through the urban space – connected to its ordinary everyday – neither floating above it nor tunnelling beneath it.

I am talking about pavement and tarmac bashing – traversing a city using feet and buses, as opposed to dropping into the dusty air-blown human vat of the Underground, its elevated un-tunnelled cousin the Overground, or any of the arterial rail lines coming in and out of the city for that matter, shifting people like emotional clusters of fleshy data from one side to the other.

Trammelling the streets is a goldmine of experience because the rewards are plenty – gifts, revelations, illuminations and surprises at every turn.

If only we remember to look up and look around more often, ‘there’s gold in them thar hills’. 

One surfaced in my journey on Monday morning.

And it smacked of an art school exercise long forgotten and suddenly remembered.

As the 73 bus scarped the edges of Marble Arch the most striking thing was not what had appeared – like the arrival of the inverted horse’s head or the jelly bean people sculptures.

Beautiful and enriching though their appearance was, this morning’s revelation was inspired by quite the opposite – by what had in fact disappeared.

The old Odeon, perched on the edge of Marble Arch and Edgware Road for as long as I can remember, was gone. In its place a large space revealing the buildings behind it and to the side of it. A 90 degree, dog-legged breather amongst the claustrophobic clutter of city buildings.

The building that was, was not only enshrined in my material view of the city I traverse – its geo-located bulk a firm, fixed point in my universe.  It was also located on both my emotional and temporal maps of the city.

The Odeon Marble Arch played high stakes in my youthful rummaging around London – the western edge of the West End. The corn-franked, pop-furtered fust of its dark interior home to many happy and boisterous outings. Heady times indeed.

So, to me, its absence was truly remarkable. An experience that was both a mournful missing and an urban eye bath in one. Truly bitter-sweet.

And it struck me that our enjoyment and the relentless revelations of the cities we inhabit are as much driven by the things time takes away – and the negative spaces that their departure leaves behind – as they are by the staggering multiplicity of new developments,  redevelopments, re-generations and resurgences of neighbourhoods, communities, boroughs, villages, estates, high streets and thoroughfares.

And it was the relationship between what is, what was and what might be that intrigued me. The tension between them.

So to the art project.

When doing basic foundation art, in still life and spatial studies, one of the first things you are taught is not only to draw the things you see in front of you in your still life – the positive – but also to render the spaces between those objects – the negatives. You are given the task of turning the negative space into a ‘thing’. To make the unseen seen. And to explore the relationship between the negative and positive. To make them both an equal part of the structural symmetry. And understand the role of both in creating Tension in the composition of things.

Simply put, this is about looking through, looking beyond – about truly ‘seeing’ – beyond the obvious

So its worth remembering that our seeing is only complete when we’ve engaged our ability to see what isn’t in the cities we live in, as well as what is.

And that we are as invigorated by the absence or removal of things as we are by the presence or addition.

The value of this level of seeing and awareness?

Hopefully it raises questions in us: questions of What if…? What was….? When did I…? Why there…? We question the way we and the spaces we exist in connect, how we attach to each other – materially, spiritually, emotionally.

Looking in this way, seeing the dynamic multi-dimensional relationship and nature of how things co-exist, not just as physical things but across time and cultures and generations reasserts our connection to the world and each other.

This kind of seeing brings the quanta level vibration of life writ large in our world. Each disappearance and appearance a vibration in the world.

Watched through the lens of time lapse – through a fluid eye – the cities would start to resemble a graphic equaliser of our existence and the utility and function of the buildings within it.

And I sense it would be beautiful.

So, to see or not to see. That is the question. And in the No. 73, for me that morning, lay an answer.

‘ got to love a bus.

Hoover bag, fish-tank, trophy cabinet & the art of wearing your intellect lightly.

30 Monday Nov 2015

Posted by Thin Air Factory in Uncategorized

≈ Leave a comment

Tags

Arts & Humanities, Atomic, beano, Class, Culture, Doctorates, Evolution, Fish Tank, gogglebox, Hipsters, Hoover bag, Hubble Telescope, Intellect, Intelligence, M Theory, Race, School Swot, Sex, Showing Off, Sir Richard Attenborough, Smarts, society, Stephen Hawking, the Sciences, Tophies, Tribe, Universe, Wit, X factor

vacuum-bag1.jpg$_35.JPGTrophy-Cabinet1.jpg

Hoover bag, fish tank or trophy cabinet? Which one describes your model of intellectual self-awareness and demeanour best?

I spend a lot of time suspended (the animation part is discretionary) between two worlds where intelligence chimes very differently and how it is worn can speak volumes:

One brims with an ‘earthy’ scrum of normal people with their pop populism, non p.c humour, fun food formats, all things sporting, inappropriate music lyrics, sudoku and simple telly pleasures:

The other teems with a rare, heavenly throng of ‘visibly’ smart people (staggeringly smart actually) whose weather eye rests not just on Gogglebox but also on the material and scientific threads that stitch us in to our universe at a sub atomic and particular level from both the inside out and the outside in: a sort of Hubble-scope meets microscope universal view. Which takes some cells, grey or otherwise.

Whilst suspended between these two worlds I have come across a myriad of different shapes and shades of accidental, expressed or demonstrable ‘intelligence’.

But for the sake of this piece I have gathered them into three buckets.

These buckets are purely based on how people ‘wear’ their intelligence, knowledge and learning. They do not seek to make points of a sex, class, race, regional or tribal nature.

Intelligence, smarts and book learning are as likely to be mocked or marvelled at in a stately home in Cumbria as they are in a mock Tudor Semi in Southall and a single-parent council house in Cleethorpes.

So the three buckets are as follows:

Hoover Bag:

The majority of us, though our intellectual reserves have been honed to some degree in our childhood and teenage years through some form of formal education, spend most of our time applying a needs-must, auto didactical approach to the appropriation, collection and storage of any information, data, knowledge and the subsequent exercising of it via what might loosely be called intellect and its reflex inventive cousin ingenuity.

We just hoover up what’s in front of us at the time; all in the moment and for little reason other than to get through, survive, overcome, complete (or avoid) the tasks that life sets in front of us. Most of it tends to be transient: pockets of old knowledge from schoolbook rote and favourite teachers, the history channel, anything ever said by Sir Richard Attenborough, the odd TV show theme tune, an ex-lover’s ‘hot tunes’, news stories, sleeve notes off albums, film quotes, holiday resort locations, train times, exam questions, sweet names, bus numbers – the majority of it utterly random and seemingly disconnected – fluff and drivel: insubstantial, frivolous, fleeting. Only of meaning in the cats cradle of life and experiences in our head. All hidden deep in the bag unless we’re compelled to have a rummage.

But in that intellectual Hoover bag somewhere, amongst all the dust and atomic grains of everyday life – with a little rooting around – and if pushed – there are brilliant little treasures to be found: nuggets; the intellectual version of shiny marbles, lost lego characters, the odd ear ring, the missing washer off that clock, and a rare coin from somewhere exotic.

It’s not that we’re incapable of being a Fish Tank or Trophy Cabinet. On the odd occasion we can be very intellectually forthright. But. We’re just not that interested. Intelligence for most is directly linked to and in relation to what we must and need to do. Work. Earn money. Buy treats. The odd holiday. Survive. With Stickers. Intellect does not represent anything of value for us to wield in the world. Exams are for getting through. Real stuff is about what books cant teach and accolades cant fake: common sense, nous, drive, smarts.

Many people remain deliriously untouched by the compulsion to scale ever- greater heights and plumb ever-deeper depths of their intellect to pull out a plum.

There is in fact a running suspicion amongst a lot of people that too much learning is bad for you. Like fatty foods and alcohol.

Referring to people as being intellectually obese or an academoholic probably hits the referential nail on the head.

A lot of people feel an antipathy to the ‘too clever by half’ bunch, not too dissimilar to the feelings people harbour for the overly fat and the commonly drunk. Fat drunks take it to a whole new level of course.

Getting above yourself is one of the most common malaises they point to in the overly smart.

Fish Tank:

Go up just one notch and things change for the shinier. This is not yet the domain of the public academic, but certainly we are now in a realm where intellectual and academic possessions are going on show – they are becoming socially important not just to the trajectory of us as a person but also to our sense of self – our core identity. Their value isn’t hidden any more.

Fish tank intellects are suddenly about visibility: about being seen to be smart. It can start small. Quipy; witty. Ripostes. Razor sharp. ‘Quick wittedness’ gets bolstered with facts and bite sized pieces of knowledge not found on the history channel or in the newspaper. Suddenly we’re utilising our intelligence not just as an evolutionary survival mechanism but as a status marker, courting tool, and social lever.

However small, simple and under-populated the fish tank might be (We’re all quietly fond of the singular fish bowl inhabited by that gold fish) there is still a shiny attractive thing to look at.

Now fish tank intellect land is the bucket that provides the most flex and room for manouvre. Because you can go from one small intellectual goldfish in a clichéd bowl of water on a window sill to a multi-atmosphere self cleaning super sized wall set super tank with teeming shoals of exquisite, rare and increasingly expensive creatures.

From Intellectual Ahhh! to intellectual WOW! At the super scale end we find ourselves in the world of the serial collector of intellectual pursuits – reaching far beyond what they will ever need for their day job. The role of intellectual curator and collector of brightly coloured intellectual exotica as a matter of projected identity is a big deal for big fish tankers. But the big difference between these and the Trophy Cabineteers is the stealth nature of the presentation. However bright, gregarious and attention seeking the various and increasingly valuable baubles are, they are not presented ‘directly’. This is a world where proofs and demonstrations of intelligence are refracted through a prism of tangential referencing – obtuse, sophisticated, shrouded – usually hidden inside some trojan horse of life learning or experience story: presented simply as a new piece of the expanding fabric of their life.

But however subtle the presentation – these brightly coloured attractive and seductive entities are most definitely for show and for effect.

These ‘exotic splashes of colour have been plucked from the sea of knowledge to aggrandise us: to decorate our lives and create conversation focused on us through them.

Trophy Cabinet

Smashed it. No time or interest in discretion or subtlety. I’m smart. I’m bloody clever. And competitive. An intellectual winner. I’ve got more degrees and PhDs than I can shake a stick at. Doctorates are just the beginning. I probably have a few Honorary Executive positions as well. Sciences. Arts. Humanities. Classics. Don’t care. Whatever it takes. I am not in the business of doing a topic. I’m in the business of being really, really clever – and wearing it on my sleeve. If anyone’s up for a Nobel Peace Prize it’ll be me. Via national and then global recognition. I am professionally clever. Love academia. A wonderful pursuit. But please keep your intellectual generosity and shared collectivism of the mind to yourself. This is the expanding me show of cerebral fabulousness.

Simply put, you’ll all come to realize that you are cerebral dwarves and I am resplendent in the glow of my own brilliance. I am Alpha Meta.

A harsh caricature? Perhaps. But the dissonance between what we consider intellectually valuable in the more rarified halls of first world academe and what humanity actually requires to live thrive and survive on this planet can sometimes make us look at the trophy cabinet persona and their exceptionally competitive and vaguely sociopathic behaviours with a not necessarily benevolent eye.

For many, especially those struggling to make ends meet and having to work all hours to do it, and for those with a natural aversion to people who speak ‘in riddles’, it is hard sometimes to see the greater value in  relentless and unquenchable pursuit of ever greater learning. To many it is hard to see why anyone should support or laud someone wanting to remain the ‘eternal student’, wrapped in ever decreasing intellectual circles on arcane subjects that owe more to human ego than evolution.

The Trophy Cabinet model of flamboyantly worn intellect is mostly seen for what it ostensibly is: a tower of self-impression: a monument to ones ego. Questionable. Perhaps.

BUT, before we start measuring how many hands high the horse is we’re leaping on to sound off about the super bright, it must be remembered that these stratospheric arrogances of the mind and the intellect (as some see them) bring much to be thankful for: scientific advances and revelations that make enormous tranches of humankind more healthy and more resilient.

Some of these people have opened doors in the fabric, nature and story of human kind and the multi-verse we exist in. And we are better for it. And for them. Whether we think they’re too smart by half or not.

Witch hunting and pointing fingers at the nerds and the super bright people is a lazy pursuit. Existing, as many do, ‘on the spectrum’, dislocated from and uncomfortable around what most like to see as ‘normal’ people, they have their own crosses to bear: crosses that many of us would never countenance let alone endure. Brainbox baiting also smacks of being ‘chippy’. Take a swing ‘cause you make me feel bad! Thankfully now that Stephen Hawking is officially rock n roll, with his own Hollywood movie to boot, and the new tech hipsters are to all effects bearded and brogued members of the Nerd tribe, the old Beano comic view of school swots is changing – slowly.

Learning, the knowledge it brings and how the individual mind processes and leverages that knowledge to best and personal effect, to inspire and engage us may be a divisive topic; but we need to celebrate and embrace every type of intellect we have if we are to continue to live, thrive and survive.

And whether the gems of insight, idea and illumination that improve our everyday lives get shaken out of a hoover bag, netted from a fish tank or taken down from the trophy cabinet, I couldn’t care less.

Now where did I put that nozzle…?

Subscribe

  • Entries (RSS)
  • Comments (RSS)

Archives

  • June 2021
  • December 2020
  • August 2020
  • April 2020
  • March 2020
  • January 2020
  • October 2019
  • June 2019
  • April 2019
  • November 2018
  • August 2018
  • June 2018
  • February 2018
  • January 2018
  • December 2017
  • November 2017
  • August 2017
  • July 2017
  • June 2017
  • May 2017
  • March 2017
  • January 2017
  • December 2016
  • November 2016
  • October 2016
  • September 2016
  • August 2016
  • June 2016
  • May 2016
  • April 2016
  • March 2016
  • February 2016
  • December 2015
  • November 2015
  • October 2015
  • September 2015
  • August 2015
  • July 2015
  • June 2015
  • May 2015
  • April 2015
  • March 2015
  • January 2015
  • December 2014
  • November 2014
  • October 2014
  • September 2014
  • August 2014
  • June 2014
  • May 2014
  • April 2014
  • March 2014
  • February 2014
  • January 2014
  • December 2013
  • November 2013
  • October 2013

Categories

  • Uncategorized

Meta

  • Register
  • Log in

Create a free website or blog at WordPress.com.

Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy
  • Follow Following
    • thinairfactoryblog
    • Join 28 other followers
    • Already have a WordPress.com account? Log in now.
    • thinairfactoryblog
    • Customize
    • Follow Following
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...