Lost on the Gene Map: We are still unequipped to deal with the ethical and medical implications of the Human Genome Project
April 27, 2012
A TINY DOT OF DNA, thousands of times smaller than a pinhead, exists in almost every cell of our bodies. Stored in its tightly wound double helix is the wisdom of nearly four billion years of evolution — the hereditary information that decides our hair colour, whether we might stutter, or if we have the potential to win an Olympic gold medal. Human DNA is typically divided into forty-six chromosomes, twenty-three inherited from each parent; theDNA on one chromosome includes hundreds, sometimes thousands, of genes. These gene segments of DNA(deoxyribonucleic acid) encode data that the cell expresses as proteins to build and operate the various parts of the body. The seven billion faces in the world, all different, reveal individual differences in our genetic makeup. But so much of our collective DNA is the same that we share a common genetic heritage: the human genome.
To comprehend genomes is to begin to unlock the mysteries of life. One of the aims of the Human Genome Project, an international research program launched in 1990, was to map and then sequence every bit of DNA in a composite human genome. The project was heralded as the first step toward personalized medicine, a new age in health care when prevention and treatment of illnesses would be guided by examining a person’s genome and genetic predispositions. Understandably, expectations for the Human Genome Project ran high, and in 1996 President Bill Clinton glowingly foretold a not-too-distant future in which parents, armed with a map of their newborn’s genetic structure, could identify the risks for illness. In his vision, the fruits of the project would help “organize the diet plan, the exercise plan, the medical treatment that would enable untold numbers of people to have far more full lives.”
When the HGP was completed in 2003, that vision was still out of reach. Thanks to technological advances, it’s now on the horizon. The expense of genomic sequencing is falling fast; in Canada today it costs $10,000 to sequence an individual genome. “Once a whole genome costs $1,000 or less, entire families will get their genomes sequenced,” says Michael Hayden, director of the Centre for Molecular Medicine and Therapeutics at the University of British Columbia. “But what will they do with that information?” Whole-genome sequencing generates enormous amounts of raw data that must be analyzed by highly qualified medical geneticists and genetic counsellors, both in short supply (Canada has about eighty medical geneticists and 230 genetic counsellors). “DNA Sequencing Caught in Deluge of Data,” ran one recent headline in the New York Times, reflecting a common view that modern medicine doesn’t yet have the expertise to tell us what this data means, much less how to act on it.
Meanwhile, some people are already circumventing the medical system and turning to cheaper and less comprehensive direct-to-consumer genetic testing technologies. Just spit in a bottle or scrape the inside of a cheek, send the sample to a service such as DNA Testing Centres of Canada, and for a few hundred dollars the company will detail your risks for a menu of diseases. Many clinicians and researchers such as Hayden are concerned that the results may be used without a doctor’s advice. Yet Robert Green, a medical geneticist at Harvard Medical School and Boston’s Brigham and Women’s Hospital, sees advantages in direct-to-consumer testing. “People are taking more responsibility for their own health,” he says. “Many are extremely comfortable empowering themselves with genetic information without the guidance of conventional medical care practitioners.”
The demand will continue to grow. Earlier this year, the federal government pledged $67.5 million toward projects in areas of health care that will benefit from approaches based on genomics and personalized medicine. And as the use of genetic testing expands, the ethical considerations multiply as well. For instance, who should be tested and why? How should patient confidentiality be protected? How much genetic information should be revealed to patients, potential employers, or health insurers? Ultimately, what limits, if any, should we impose on this rapidly advancing technology?
GENETICS HAS long been an ethical minefield. When Gregor Mendel’s pioneering work on genes was recognized at the start of the twentieth century, the pseudo-Darwinian philosophy of eugenics (controlled human breeding for desirable characteristics) was in full flight. When eugenics culminated in the Nazis’ horrifying promotion of Aryan racial supremacy, the new science of human genetics became tarnished. Later in the century, recombinant DNA technology led to the controversial use of gene splicing in agriculture. The most common genetically modified foods are soybeans and corn, which can be engineered to generate their own insecticides. Several European Union countries, including Germany, have applied safeguard clauses to ban genetically modified organisms, and have at times refused to import North American food products that may contain them. Opponents in North America claim their use has been approved by regulatory bodies without sufficient independent, evidence-based testing of their long-term effects on the food chain, and particularly on produce for human consumption.
The advent of GMOs raised the distinct possibility that once the nascent Human Genome Project provided a complete genetic road map, biotechnology could enhance humans, too. Those who found the idea objectionable weren’t reassured by pre-implantation genetic diagnosis, another new form of biotech wizardry. This involves vetting a newly fertilized egg for genetic mutations that might indicate a disease such as cystic fibrosis, and electing not to implant the egg if the variants point to potentially catastrophic outcomes. Although most North American testing companies use PGD solely to detect diseases, rejecting an embryo because of its gender is commonplace in a handful of countries, among them Turkey, China, and India. The prevailing concern, however, is that PGD will lead to the creation of “designer babies”: once genomic medicine advances sufficiently, it could grant parents’ every whim, from blue eyes or bulging biceps to musical talent or exceptional intelligence.
At the turn of the millennium, HGP plus GMO plus PGD added up to a robust fear of — or, in some cases, a desire for — “playing God,” which contributed to President George W. Bush’s decision to establish a council on bioethics. At its first meeting in 2002, chairman Leon Kass asked the members to read “The Birthmark,” Nathaniel Hawthorne’s short story about a scientist obsessed with a blemish on his beautiful wife’s face. Determined to perfect her, he removes it — killing her in the process. Kass used the story to encourage his colleagues to frame the ethical issues raised by advances in biotechnology, such as the HGP, within the broader philosophical perspective of how far humanity should aspire to perfection, and at what price…
Islam’s Origins: Where Mystery Meets History: The same spotlight of historical enquiry that scholars have long been shedding on the biblical past is now starting to illumine the origins of Islam
April 27, 2012
Midway through the eighth century a monk living in the monastery of Beth Hale in Iraq recorded the arrival there of an eminent visitor. A ‘Son of Ishmael’ – one of the Arab dignitaries who served at the court of the caliph – had fallen ill. Naturally enough, since Christian holy men were renowned for effecting miracle cures, he had turned to the monks to help him with his convalescence. The Arab stayed ten days in the monastery and in that time he and his hosts argued freely about their respective religions. The monk, of course, portrayed himself as emphatically the winner. Nevertheless it is clear that the Arab had managed to land the odd blow. ‘Is not our faith better than any faith that is on the earth?’ he had demanded to know. ‘And is this not the sign that God loves us and is pleased with our faith – namely, that he has given us dominion over all religions and all peoples?’
The terms of this argument, it is true, were hardly original to Islam. Back in the early fourth century Eusebius, a Palestinian bishop, had written a biography of Constantine (r. 306-37), the emperor who had stunned the Roman world by converting to Christianity. God had blessed him for bowing his head before Christ with any number of rewards. Eusebius, who combined the talents of a polemicist with a profound streak of hero-worship, had sheltered no doubts on that score: ‘So dear was Constantine to God, and so blessed, so pious and so fortunate in all he undertook that with the greatest facility he obtained authority over more nations than any who had preceded him – and yet retained his power, undisturbed, to the very close of his life.’
This core equation – that worldly greatness was bestowed by God upon those who pleased Him – was one that reached back to the origins of human belief in the supernatural. Rarely had a society existed that did not see itself as somehow blessed by divine approval. Empires had invariably cast themselves as the favourites of the gods. So it was, some 300 years before Constantine, that Virgil had defined the Romans as a people entrusted by the heavens with a sacred charge: to spare the vanquished and to overthrow the haughty. A potent sentiment and an enduring one. Muslims as well as Christians had proven to be its heirs. The Qu’ran, composed though it was on the margins of the Roman world during the seventh century, bore witness to a conception of imperial mission that was not so different from the pretensions of Virgil’s day: ‘When you encounter the unbelievers, blows to necks it shall be until, once you have routed them, you are to tighten their fetters.’ So Muhammad, serving as the mouthpiece of God, had informed his followers. ‘Thereafter, it is either gracious bestowal of freedom or holding them to ransom, until war has laid down its burdens.’
Yet by the time of Muhammad (570-632) much had changed from the heyday of the pagan empire and to seismic effect. The revolutionary notion that the universe was governed by a single, all-powerful god had decisively transformed people’s understanding of what the sanction of the heavens might mean. Just as Constantine had discovered in Christ an infinitely more potent patron than Apollo or Sol Invictus had ever been, so those who turned to the pages of the Qu’ran found revealed there a celestial monarch of such limitless and terrifying power that there could certainly be no question of portraying Him – as the Christians did with their god – in human form. Nothing, literally nothing, was beyond Him. ‘If He wishes, O mankind, He can make you disappear and bring others in your stead.’ To a deity capable of such a prodigious feat of annihilation what was the overthrow of an empire or two? Remarkable though it was that the previously despised and marginal Arabs had managed to trample down both Roman and Persian power, no explanation was needed for this, so Muslims came to believe, that did not derive from an even more awesome and heart-stopping miracle: the revelation to the Prophet of the Qu’ran. What surprise that a fire lit far beyond the reach of the ancient superpowers should have spread to illuminate the entire world when that fire was the Word of God?
So it was, across a vast sweep of Eurasia, stretching from the Atlantic coast to the frontiers of China, that a distinctive understanding of history came to be taken for granted. Whether in Christendom or in the House of Islam, the past was understood as the tracing of patterns upon the centuries by the forefinger of God. The divine had intruded into the sweep of earthly events and everything had changed as a result. The very fabric of time had been rent. Quite how a deity who transcended eternity and space might actually have descended from heaven to earth was, of course, a tricky problem for Christians and Muslims alike to solve and it took bitter and occasionally murderous argument to arrive at anything like a consensus. Only centuries after the birth of Christ did Christians come definitively to accept that their saviour had been both perfect man and perfect God; only centuries after the emigration of Muhammad from Mecca did Muslims come definitively to accept that the Qu’ran was eternal, not created. Such wrangling had been inevitable. Fathoming the purposes of an omnipotent and omniscient deity was no simple matter. As a ninth-century Muslim scholar, in a tone of awed defeatism, confessed: ‘Imagination does not reach Him, and thinking does not comprehend Him.’
Nevertheless, while Muslims and Christians had faced similar knots their respective attempts to unravel these had set them on radically different courses. The word, so it was claimed in St John’s gospel, had become flesh. The record of Christ’s life, for all that it lay at the heart of the Christian faith, was not itself considered divine, unlike Christ himself. Although Christians believed the Bible to be the word of God, they also knew that it had been mediated through fallible mortals. Not only were there four different accounts of Christ’s life in the Bible, but it contained a whole host of other books, written over a vast expanse of time, demanding to be sifted, compared and weighed against one other. As a result the contextualising of ancient texts came to be second nature to biblical scholars, and not just to believers…
China’s Accidental Spies: Is an unassuming group of Chinese bloggers who are obsessed with military hardware doing the Pentagon’s work? Or Beijing’s?
April 27, 2012
The jet fighter suddenly appears directly overhead, twin engines roaring, landing gear dangling like claws, diamond-shaped wings tracing an impressive black silhouette against the grayish sky. The airplane, displaying the red-star insignia of the Chinese People’s Liberation Army, whips past and disappears beyond the opposite horizon.
In its wake, there is only the gray sky — and the excited chatter of a cameraman and the other airplane aficionados huddled around him. “The wind was strong!” someone says in the local Sichuan dialect, referring to the blast from the fighter’s engines.
They laugh nervously, clearly appreciating that they’ve just witnessed, and recorded, something remarkable: the second-ever test flight of the Chinese military’s very first stealth fighter prototype — the J-20 “Annihilator,” an advanced “fifth-generation” warplane that some experts say could rival America’s latest F-22 and F-35 stealth fighters — on the outskirts of Chengdu, an industrial city of 14 million in central China.
But the most remarkable thing is what would happen in the hours following the April 17 flight last year: the cameraman, using the handle “Star Not,” uploaded his video to Youku, a Chinese YouTube clone that is closely monitored by the Chinese government.
The video itself was nothing special. But the fact that it didn’t immediately disappear, yanked from the server by a vigilant censor, was.
Along with several others taken from the same spot at the same time, the video quickly went viral. The same day, Web users all over the world snatched the Youku videos and uploaded them to other video-sharing sites, including YouTube. Thousands of people on almost every continent shared a detailed glimpse, however brief, of what until recently had been the Chinese air force’s greatest secret.
The first grainy photos and fragmentary videos of the J-20 in flight had appeared three months earlier. But many of those images were the military-industrial equivalent of the 1967 amateur film that purported to show Bigfoot strolling through a California forest. In other words, implausible.
Western analysts and reporters had heard rumors of a warplane called the J-20. But almost all of China’s warplane designs to date were poor copies of older Russian planes — and most observers believed the J-20 would be the same middling stuff. Absent firmer proof, it was easiest to dismiss the jet in those early snapshots as the product of someone’s imagination and Photoshop.
But Star Not’s video was undeniably authentic, and therefore ideal fodder for an online audience hungry for information about the new warplane from the world’s fastest-growing military power, which in the video looked impressive. The same audience devours rumors about, and photos of, Chinese unmanned aerial vehicles, ballistic missiles, helicopters, armored vehicles, submarines, and, most famously, the PLA’s first aircraft carrier, which sailed on its debut voyage in July.
The majority of that audience is Chinese, and in it for the “coolness” value. “Dan,” a 40-something Chinese man living in America, is typical. (Like other “forumers” interviewed for this story, he asked that his real name not be used.) Since 1995, Dan has been an active member of Chinese Internet forums specializing in military news and gossip. The forums are, in essence, updated versions of the chat rooms that were so popular in the U.S. a decade ago. “I played with many toys like tanks, warships, and aircraft,” Dan told me by email. “Now I visit military forums just for fun.”
But there’s a more serious side to the online audience. Besides millions of everyday Chinese, visitors to China’s military forums include Western journalists, U.S. congressional staffers, Beltway think tank analysts, and other members of the American policymaking machine…
April 27, 2012
This image has been posted with express written permission. This cartoon was originally published at Town Hall.