麻豆传媒

IN THE 18 years since the Human Genome Project was declared complete, untold billions have been poured into projects promising to map and interpret our genetic code. Hopes and fears for the expected revolution have diffused through hospital waiting rooms, science fictions and pop-up adverts for off-the-shelf DNA testing kits.

The promises come thick and fast. Surely we will soon see a revolution in healthcare, our futures laid out before us: diseases, abilities, lifespans, drug susceptibilities. Soon everyone will understand themselves in new, meaningful ways. There are risks, yes, though these also remain uncertain. Anyone for cloning? The planting of false genetic evidence? New forms of surveillance and discrimination? The world would certainly change 鈥� except that it hasn鈥檛.

Jenny Reardon鈥檚 The Postgenomic Condition draws on decades of fieldwork to tell stories that lay bare the intricate tangle of technologies, individuals, institutions, expectations, experiments, businesses, communities, acts of resistance and superhuman efforts of grinding hard work that make up our genomic age. It is an example of the best kind of sociological writing, where specific, detailed, well-told stories are built into a powerful set of arguments with implications not only for the field in question, but for wider society too. This is a book not just about what went wrong in genomics, and how hopes for a better world go awry, it is also about what happens when our democracy encounters new technologies that refuse to sit still long enough to be understood.

It is an enormous, messy challenge to take on. Fictional dystopias struggle to keep pace with genetics. In a recent episode of science fiction TV series Black Mirror, an awkward nerd steals his co-workers鈥� DNA to exploit and bully their clones. In the real, present world, and concoct conspiracy theories to explain why their results don鈥檛 reflect the 鈥減ure blood鈥� they crave. Once you have exhausted your interest in your own DNA, you can post a stool sample to uBiome to sequence the bacteria in your gut, or send in your dog鈥檚 spit to ascertain its breed.

These tests draw on the persistent, enticing metaphor of genetics as a 鈥渂ook of life鈥� 鈥� a magical tome that, decrypted, would spill secrets of our past and future: our pedigree (Kennel Club or otherwise), our susceptibilities to illness, our innate capabilities and the traits and possibilities we might pass on to our children.

But recent years have seen a growing sense that this metaphor has failed. In 2010, Craig Venter, the photo-finish loser of the race to sequence the human genome in 2000, said from the genome. And since then, though sequencing technologies have become faster and cheaper, and our biobanks and databases continue to grow, few clear single-gene causes for single, clear health problems have been identified. We are mired in disappointment; in Reardon鈥檚 words 鈥渟truggling to reap the promised harvest of 鈥榤eaningful knowledge鈥� that might foster life and human understanding鈥�.

鈥淎nyone for cloning? The planting of false evidence? New forms of surveillance and discrimination?鈥�

We have a few genetic tests 鈥� for rare diseases such as Huntington鈥檚 and cancer risks such as the gene BRCA1 鈥� but tests don鈥檛 mean treatments. They have value, but they aren鈥檛 the world-changing revolutions we thought we were trading our blood and tissues for. Billions and billions of dollars have been spent in a world short of doctors, where nurses visit food banks, where antimicrobial resistance is on the rise, where simple things that we know work to radically improve population health (education, empowerment, better food and housing) are inaccessible to so many. Was chasing the slim hope of staggeringly expensive, targeted treatments for the elite really the best use of our resources? Reardon faces these questions head on.

Visiting a largely black rural community in Tuskegee, Alabama, she speaks to local people who have been asked for DNA samples. Living in the shadow of the infamous , which ran roughshod over the interests of black male patients in the pursuit of medical data, they are understandably suspicious. Their entrenched poverty has made them valuable research subjects: unable to escape, many families haven鈥檛 moved far since their ancestors were emancipated. There is no hospital within a 40-minute drive, and a genetic test to see if a child has sickle cell anemia, for instance, is a pointless luxury as the family couldn鈥檛 afford or access care either way. 鈥淭he truth as I see it: [genetics] is not important,鈥� says one resident, 鈥淎nd it鈥檚 not important because there is so much else wrong.鈥�

There is no simple enemy here, and no single mistake. In her account of the Human Genome Project, Reardon refuses to succumb to the familiar myth in which valiant academics worked through the night to vanquish greedy corporate interests and save the genome for the human race. She paints instead a nuanced picture of the actions and motivations of the institutions and individuals involved. This refusal to settle for simple answers is maintained throughout the book.

The theoretical argument strung through this chain of stories 鈥� about national biobanks and start-ups, research projects and acts of community resistance, experiments, ad campaigns and corporate takeovers 鈥� centres on Hannah Arendt鈥檚 assertion that democracy relies on our ability to identify things of value, and to gather around those things to decide what to do with them. In genomics (and, by implication, the wider world of frantic technological innovation), Reardon argues that every part of this construction comes under threat.

A blur of innovation

The current pace of technological change and rapidly developing scientific understanding means that 鈥渢hings鈥� are developed and discarded so fast that we are unable to identify them and then debate or regulate them. 鈥淭hinking鈥�, too, is degraded by being offloaded to machines that can compute but never understand. Reardon draws on philosopher Jean-Fran莽ois Lyotard鈥檚 claim that automation reduces thought to data handling so that 鈥渒nowledge is unhinged from its claim to truth and to justice鈥�. We have all this data, but in the words of the linguist Geoffrey Nunberg, 鈥渢here鈥檚 no road back from bits to meaning鈥�.

We learn that Iceland, home of the Althing, the world鈥檚 oldest extant parliament, was, appropriately, the first place to define its population鈥檚 genetic matter as a lucrative natural resource. Developing a strategy to exploit it proved far harder. An international scandal followed and the project stagnated.

鈥淕enetic tests have value, but they aren鈥檛 the revolutions we thought we were trading our blood for鈥�

Another national genomic project, , attempted to improve on Iceland鈥檚 efforts. Focus groups, interviews and surveys were employed to ensure that the project鈥檚 鈥渂enefits鈥� would be returned to the National Health Service and the public. Reardon leads us along the path by which these benefits, as the public understood them 鈥� respect for the communal nature of the information contained in DNA; promotion of health as a common good 鈥� mutated into a simple, four-way split of the profits. And then how it became clear, despite the best intentions, that there would be no profit, and probably little knowledge. The main outcome of the project was an improvement in the design of corporate-owned sequencing machines.

The challenge in these tales is to stop looking for evil, singular, pantomime villains (there are none, though the book features spectacular characters and tense conflicts), to look past the markets and their inability to provide meaningful answers to the challenges set by new technologies, and deal with the fact that our democratic institutions, faced with these same technologies, aren鈥檛 even framing sensible questions.

This article appeared in print under the headline 鈥淲hen gene tech hides in plain sight鈥�