THE AGE of bioinformation did not arrive quietly. Advances in data sciences and life sciences deep in university laboratories and corporate R&D departments were accompanied by profound changes in public expectations and everyday habits. They also generated explosive headlines and raised questions not just about health, but about privacy, property and identity too. Bronwyn Parry and Beth Greenhough’s Bioinformation is a brief yet rich tour of a dynamic, complex field, following the winding paths that connect databases to the hopes and rights of the people and communities from whose bodies the information was drawn. There are lives – and enormous profits – at stake.

Images of self-monitoring abound. Online, on paper, on TV, on social media, and slamming into us as they run down the street in sweaty lycra, we are surrounded by grinning, toned bodies weighed down by sensor-rich bracelets tracking pulse, steps, stress, sleep
 Start-ups assure us that, in exchange for a simple spit sample, they can lay bare our genetic histories and futures with ancestry tests and detailed breakdowns of our health risks. Some promise to extract the mysteries of our microbiomes from faecal matter in the post.

The familiar urge to “know thyself” now sustains a global ecosystem of biobanks, universities, pharmaceutical companies and data giants. If we want to grasp the true power of bioinformation, we must turn from individual donors and their everyday routines to see how their data, combined with the information of thousands of others, can be mined for patterns and insights. It is this sensitive, tangled transaction that forms the focus of Bioinformation: how can things that are so intimate, personal and powerful be ethically extracted and repurposed on an enormous scale? How can society gain the benefits of new technology without causing harm to those who donated their tissues? How can donation occur ethically, when it comes with unknowable risks and so much of “our” bioinformation, especially DNA, is shared with our families and communities? How do we live well with this growing capacity to predict futures and uncover secrets?

DNA epitomises this complexity. Across the examples and stories in Bioinformation, we chase it from crime scenes to maternity wards. Or both: in one case, an incest prosecution used blood samples that had been drawn to screen babies for serious illnesses. We hear about people with breast cancer who donated tissues in the hunt for the BRCA genes that contribute to the risk of this cancer. They wanted to help their families. Instead, they helped Myriad Genetics, the company that studied those tissues, to establish broad gene patents and achieve large profits by selling tests that many donor families could not afford. We follow the Hagahai people of Papua New Guinea, many of whom carry a mutation that promises a cure for leukaemia. We are asked how, when a gene is common in a community, an individual’s consent to donate their DNA can be weighed against the objections of others who share so much of it. The authors balance the hope of improving community health against what others see as a colonialist process of extraction, whereby cures are developed that donors may never be able to afford or access.

Parry and Greenhough are at pains to avoid easy answers, and never let the substance of bioinformation settle into one form. DNA itself frustrates traditional privacy or property rights: personal and shared, ever-present, but inaccessible without expensive technologies and the labour and creativity of scientists.

The questions of how we responsibly handle our growing capacities in data and life sciences are ever more urgent. As our databases grow and algorithms get more powerful, all data becomes health data. An algorithm that can use selfies to diagnose genetic disorders – which often affect the skull’s development – may be life-saving. An algorithm that claims to predict sexuality or criminality from a picture of a face raises the terrifying spectre of profiling and discrimination, mostly inaccurate and often based on flawed methodology.

“The familiar urge to ‘know thyself’ now sustains a global ecosystem of data giants”

There are no simple answers. Parry and Greenhough suggest the first steps towards a fairer future, pointing towards community-owned biobanks and efforts to grant donors the legal right to access treatments and cures their tissues helped create. But these choices will always mix the technical and legal with the deeply personal. The case of Nancy Wexler stands out: motivated by her family’s history of Huntington’s disease, she crossed the globe to collect samples and genealogies from affected families, created a biobank, mapped the gene, and developed both a prenatal and a pre-symptomatic test. In the end, she chose not to take either test herself. She preferred to live in uncertain hope.

This article appeared in print under the headline “Healthy curiosity?”

The new “journey through science fiction” at the Barbican Centre in London offers a fun, frantic sprint through the crowded, colourful scenery of classic science fiction. The journey might be a little directionless, but Into the Unknown is undeniably enjoyable – a very comfortable coming home.

The exhibition’s heart is the Curve gallery, filled to bursting with over a century of nostalgia fuel. Rockets and airships, space warriors and dinosaurs urge us ever onwards with spectacular energy – attended by an enormous and familiar supporting cast of writers such as Jules Verne and H. Rider Haggard, props and film clips from Star Wars, Jurassic Park, Alien, Stargate, Interstellar and Metropolis.

The Curve has an impressive collection of trophies, packed to the ceiling (frequently spilling over visitors’ heads) with masks, models, film clips, storyboards – all enticing portals opening backwards into childhood’s futures. It’s accompanied by talks, book clubs and a rich offering of films, ranging from Soviet space travel, Japanese monster movies and old favourites like Soylent Green and the original Tron through to 2013’s Gravity. A selection of commissioned and contemporary works, including one from Black Mirror, serve up more modern and critical dystopias.

In between the spaceships and dinosaurs, there are texts, book covers and meditations on the power and purpose of science fiction both as art form and intellectual tool. But frustratingly, these often intriguing ideas are mentioned only in passing. Visitors are left to piece together their own ideas – difficult when a real Darth Vader mask, Star Trek spacesuits, an enormous, loud, interactive NASA console, and recognisable characters prompt squeals of excitement every 30 seconds.

Many of the displays are adverts and propaganda: the definition of fiction here extending far beyond entertainment. These are images of the future that are explicitly attempting to shape the present. “Tomorrow”, one panel explains, is a concept used to sell products and ideologies, but there is no further discussion of how or why.

Sci-fi propaganda

Adverts for Shell or for jobs in the aeronautics industry are arranged next to covers of the Soviet magazine Technology for Youth. All of them use strikingly similar rockets and airships, drawing on earlier iconography of popular science fiction to urge readers to buy into their respective systems of markets and beliefs. Convincingly seizing control of tomorrow gives extraordinary power to steer the choices we make today.

The exhibition’s dramatically lit opening text informs visitors that after a long time on the fringe, “Science fiction is now all around us.” Frustratingly, the exhibition repeats this trope while refusing to fully confront its literal truth.

Many of the richest individuals, companies and governments in today’s world are pouring investment into putting still more of the imaginary products of Victorian collectible cigarette cards onto our shelves and our streets. Self-driving cars or flying ones, private space travel, AI assistants, all hover on the edge of the real. Some of the most highly valued companies in history – Uber, Google and Tesla – literally survive on the capacity of investors to imagine and have faith that these still-fictional sciences will become fully real.

Science fiction is an enormously powerful tool for shaping our understanding of the present and hopes for the future. By weaving together science and stories, we entangle new technologies and discoveries in the web of culture. As such, by celebrating nostalgia without examining the political circumstances of their creation we risk reproducing the same old biases of sexism, racism and more.

The future is an active battleground. It shapes our expectations and investments: not just what products we desire, but also who we conceive of as heroes and agents of change. Moves away from the white male protagonists celebrated in much of the exhibition’s trophies are met with furious resistance. An all-female Ghostbusters, for example, prompts death threats, while new Star Wars films with women and people of colour in lead roles are boycotted (though with little effect on box office takings).

Inclusion excluded

When the largest Hollywood studios are willing to take firm stances on inclusion and invest in a broader range of stars, it is frustrating that an exhibition filled with such wonder and thought does not engage more directly in these concerns.

There are nods towards dystopias, and towards fictions that explore not just new stuff, but new ways of thinking. In one area, entitled Brave New Worlds, we find Ursula Le Guin and Margaret Atwood novels behind glass, while in Final Frontiers, thoughtful artworks prompt speculation on ways of seeing and being.

But these are scattered rather confusingly among Blade Runner – Autoencoded (in which Terence Broad has taught a neural net to “watch” Blade Runner and show us what it sees, or, less romantically, to understand the raw video data and re-encode it) and clips from Donnie Darko.

And then there is Soda_Jerk’s Astro Black: Race for space, which mixes clips from The Matrix, Star Wars, Apollo 13 and a dozen more films plus extra footage to explore the story of musician, poet and philosopher Sun Ra’s abduction by aliens and repurpose familiar images in an Afrofuturist vision of the future. It is worth stepping out of the excited throng into its dark corner and watching for the full 25 minutes.

In the end, though, Into the Unknown’s confusion is its delight. Perhaps pinning down science fiction’s form and purpose is a hopeless task, and instead this bright, overwhelming cacophony of familiar faces and radical visions is the best expression of its value. The refusal to engage with meatier ideas is frustrating but only because the exhibition raises so many questions. The hope is that visitors will come away not only thrilled by the fetishes of futures past, but also inspired to repurpose and experiment, and boldly explore their own new frontiers.

is at the Barbican Centre in London until 1 September