01.29.13 7:39 PM ET
The Selfish Gene: The Broken Promises of the Human Genome Project
“With every increase in the degree of consciousness, and in proportion to that increase, the intensity of despair increases,” the philosopher Søren Kierkegaard once wrote, in The Sickness Unto Death—not exactly a jolly title. “The more consciousness, the more intense the despair.” In that spirit, Genes, Cells, and Brains: The Promethean Promises of the New Biology, arrives as a skeptical view of the alleged progress offered by genetics, cellular biology, and neuroscience. Hilary Rose, a sociologist at Bradford University and the London School of Economics, and her husband Steven Rose, a biologist and neuroscientist from Open University, unwind the myriad assumptions about technology as the engine of improvement in our lives and offers a powerful argument against the sociopolitical machinery behind these dream disciplines.
For the Roses, the signal image of this movement is Walter Gilbert, one of the lead scientists on the Human Genome Project, standing on stage promising the possibility of fitting the code for human life onto a CD-ROM. This is the model for science in the Petri dish of post-industrial capitalism, reductionist fantasies delivered from a PR platform meant to turn public excitement into investor support. Scientists begin with a fixed conclusion, hyperbolize the benefits of reaching it, and then spend large amounts of private and public money to reach it only to discover their original promises were impossible. The Human Genome Project began not with a question, but an answer that had to be substantiated in reverse.
More than two decades later there is little to show, though an intrepid beauty-product company has used genomics to create a better shampoo. In the end, it was discovered that only 2 percent of the genes in the human genome are responsible for coding proteins, thought to be central to life, while the other 98 percent were written off as “junk.” Researchers consequently discovered an “almost embarrassing closeness” of the human genome and that of chimpanzees. “Unless set in the context of the development of the organism, DNA sequences were meaningless, and unless set in the context of evolution, the fact that humans and chimpanzees have nearly identical sequences was incomprehensible,” the Roses argue.
All the same, what might have been seen as an embarrassing anticlimax was a major economic opportunity. The U.S. government invested $3.8 billion in the project, which, according to a study from the Battelle Institute, generated $796 billion for the U.S. economy and supported more than 310,000 jobs. Strange new industries began to appear in which people pay to peer into the murk of their DNA to see if they are predisposed to one disease or another. 23andMe is perhaps the most recognizable company selling these probability readings, famously supported by Google's Sergey Brin. Disturbingly, the practice has become common with in-vitro fertilization, allowing couples to view the odds of whether their newly conceived fetus might have some hereditary condition, in which case they might be advised to abort and try again.
The Roses argue these conditions point toward widespread “consumer eugenics” in which people pursue incremental self-improvement technologies, while the austerity-driven withdrawal of social services pressures people to internalize values that imply a child, sibling, or neighbor with a mutagenic health condition is a net negative on the ledger sheet of human progress. There is a “double agenda [that] produces an invisible norm determining the ‘acceptable’ number of children with impairments that can be born … first that the pregnant woman is enabled to make an informed choice; second that the state's burden arising from the care needs of those born genetically impaired is minimised.”
It's fitting that Genes, Cells, and Brains arrives at the same time as a report from the Institute of Medicine and National Research Council showing Americans have the lowest probability of surviving to the age of 50 among a group of 16 wealthy countries including Canada, Japan, Spain, and Germany. The U.S. also has the highest incidence of sexually transmitted infections, teen pregnancy, and infant mortality in the group. In a time of real human suffering and dramatically worsening social conditions in the richest country in the world, there is something perverse about chasing scientific advancement that only the tiniest percentage of people will have access to, driven by the optimism of impossible promises.
It's possible to view scientific advancement not as a marker of human progress but as a separatist illusion used to justify the accumulation of wealth by the few, building new speculative societies with iPhones, gene therapy, and regenerative medicine, while everyone else festers in shanty towns and militarized city slums. Does it matter if there is a cure for cancer but no one will share it with you? Moreover, is it conceivable that the conditions required for a cure depend on the exploitation and immiseration of the many for the sake of the few?
In the thrilling early years of the Human Genome Project, scientists flew all over the world to study the genes of as many different races and ethnic groups as possible. When one group arrived in Peru to sample the Q'ero Tribe, community president Benito Machacca Apaza declined the invitation to participate in the study. “The Q'ero Nation knows its history, its past, present, and future is our Inca culture, and we don't need any so-called genetic study to know who we are," Machacca wrote.
This was not just a way of rejecting the benefits of Western technological advancement, but an acknowledgement that its benefits often exclude groups like the Q'ero, or come at their expense through occupation, resource theft and forced labor. For Machacca, science was a tool for separating a person from his or her identity in order to push them into a life of technological interdependency. In declining the offer of raising one's consciousness at the price of future despair, he instead suggested the answer to the researchers’ question was already known. In a way, it should have been obvious. "We are Incas," he wrote. "We always have been and always will be."