YEAR IN REVIEW 2001: SPECIAL-REPORT: HUMAN GENOME PROJECT

Human Genome Project:Road Map for Science and Medicine Certain to rank among the all-time landmarks of human technical achievement, the completion of a rough draft of the sequence of the human nuclear genome was announced in June 2000. Its significance and ramifications for science and society are both broad and profound, and, as with any empowering technical advance, the challenge that now faces humanity, both as individuals and as a global community, is to determine how to use that power wisely. Invasion of Privacy on the Internet In the year 2000 concerns about privacy in cyberspace became an issue of international debate. As reading and writing, health care and shopping, and sex and gossip increasingly took place in cyberspace, citizens around the world seemed concerned that the most intimate details of their daily lives were being monitored, searched, recorded, stored, and often misinterpreted when taken out of context. For many, the greatest threats to privacy came not from state agents but from the architecture of e-commerce itself, which was based, in unprecedented ways, on the recording and exchange of intimate personal information. In 2000 the new threats to privacy were crystallized by the case of DoubleClick, Inc. For a few years DoubleClick, the Internet's largest advertising company, had been compiling detailed information on the browsing habits of millions of World Wide Web users by placing "cookie" files on computer hard drives. Cookies are electronic footprints that allow Web sites and advertising networks to monitor people's on-line movements with telescopic precision-including the search terms people enter as well as the articles they skim and how long they spend skimming them. As long as users were confident that their virtual identities were not being linked to their actual identities, many were happy to accept DoubleClick cookies in exchange for the convenience of navigating the Web more efficiently. Then in November 1999 DoubleClick bought Abacus Direct, which held a database of names, addresses, and information about the off-line buying habits of 90 million households compiled from the largest direct-mail catalogs and retailers in the nation. Two months later DoubleClick began compiling profiles linking individuals' actual names and addresses to Abacus's detailed records of their on-line and off-line purchases. Suddenly, shopping that once seemed anonymous was being archived in personally identifiable dossiers. Under pressure from privacy advocates and dot-com investors, DoubleClick announced in March 2000 that it would postpone its profiling scheme until the U.S. government and the e-commerce industry had agreed on privacy standards. The retreat of DoubleClick might seem like a victory for privacy, but it was only an early battle in a much larger war-one in which many observers expected privacy to be vanquished. "You already have zero privacy-get over it," Scott McNealy, the CEO of Sun Microsystems, memorably remarked in 1999 in response to a question at a product show at which Sun introduced a new interactive technology called Jini. Sun's cheerful Web site promised to usher in the "networked home" of the future, in which the company's "gateway" software would operate "like a congenial party host inside the home to help consumer appliances communicate intelligently with each other and with outside networks." In this chatty new world of electronic networking, a household's refrigerator and coffeemaker could talk to a television, and all three could be monitored from the office computer. The incessant information exchanged by these gossiping appliances might, of course, generate detailed records of the most intimate details of their owners' daily lives. New evidence seemed to emerge every day to support McNealy's grim verdict about the triumph of on-line surveillance technology over privacy. A survey of nearly a thousand large companies conducted by the American Management Association in 2000 found that more than half the large American firms surveyed monitored the Internet connections of their employees. Two-thirds of the firms monitored e-mail messages, computer files, or telephone conversations, up from only 35% three years earlier. Some companies used Orwellian computer software with names like Spector, Assentor, or Investigator that originally was available for as little as $99 and could monitor and record every keystroke on the computer with video-like precision. These virtual snoops could also be programmed to screen all incoming and outgoing e-mail for forbidden words and phrases-such as those involving racism, body parts, or the name of the boss-and then forward suspicious messages to a supervisor for review. Changes in the delivery of books, music, and television were extending these technologies of surveillance beyond the office, blurring the boundaries between work and home. Amazon.com was criticized in 1999 for a feature that used postal codes and Internet domain names to identify the most popular books purchased on-line by employees at prominent corporations. In 2000 Amazon created further controversy by changing its privacy policy without warning and announcing that it would no longer permit customers to block the sharing of personal data. The same technologies that made it possible to download digitally stored books, compact discs, and movies directly onto computer hard drives would soon make it possible for publishers and entertainment companies to record and monitor each individual's browsing habits with unsettling specificity. "Snitchware" programs could regulate not only which books an individual read but also how many times he or she read them, charging different royalties on the basis of whether parts of the book were copied or forwarded to a friend. Television, too, was being redesigned to create precise records of viewing habits. A new electronic device known as a personal video recorder made it possible to store up to 30 hours of television programs; it also enabled viewers to skip commercials and to create their own program lineups. One model, TiVo, established viewer profiles that it then used to make viewing suggestions and to record future shows. There was also growing concern about Globally Unique Identifiers, or GUIDs, that made it possible to link every document, e-mail message, and on-line chat room posting with the real-world identity of the individual who created it. In effect, GUIDs are a kind of serial number that can be linked with a person's name and e-mail address when he or she registers on-line for a product or service. In November 1999 RealJukebox, one of the most popular Internet music players, with reportedly 45 million registered users, became a focus of media attention when privacy advocates noted that the player could relay information to its parent company, RealNetworks, about the music each user downloaded, and that this could be matched with a unique identification number that pinpointed the user's identity. RealNetwork insisted that the company had never, in fact, matched the GUIDs with the data about music preferences. Nevertheless, hours after the media outcry began, RealNetworks disabled the GUIDs to avoid a DoubleClick-like public relations debacle. Even some software products such as Microsoft Corp.'s Word 97 and PowerPoint 97 embedded unique identifiers into every document. Soon all documents created electronically might have invisible markings that could be traced back to the author or recipient. Americans increasingly seemed to agree that Congress should save them from the worst excesses of on-line profiling. In a Business Week poll conducted in March, 57% of the respondents said that the government should pass laws regulating how personal information could be collected and used on the Internet. The European Union, for example, adopted the principle that information gathered for one purpose could not be sold or disclosed for another purpose without the consent of the individual concerned. The United States declined to adopt similar protection, even in light of evidence that bankrupt dot-coms, such as Toysmart, were being sold to other companies eager to sell personal data that had been collected on the condition that it not be disclosed. Efforts to pass comprehensive privacy legislation in the U.S. had long been thwarted by a political reality: the beneficiaries of privacy-everyone, in the abstract-were anonymous and diffuse, while the corporate opponents of privacy were well organized and well heeled. For this reason many privacy advocates were putting more emphasis on privacy-enhancing technologies, such as those offered by companies like Montreal-based Zero-Knowledge.com, that made it possible for an individual to cover his or her electronic tracks by, for example, browsing the Web and sending e-mails anonymously or pseudonymously. There is no single solution to the erosion of privacy in cyberspace, no single law that can be proposed or single technology that can be invented to stop the profilers and surveillants in their tracks. The battle for privacy must be fought on many fronts-legal, political, and technological-and each new assault must be vigilantly resisted as it occurs. There is nothing inevitable about the erosion of privacy in cyberspace, just as there is nothing inevitable about its reconstruction. We have the ability to rebuild some of the private spaces we have lost. What we need now is the will. Jeffrey Rosen is an associate professor at the George Washington University Law School and author of The Unwanted Gaze: The Destruction of Privacy in America (Random House, 2000). Part of this report is adopted from his article "The Eroded Self," which first appeared in The New York Times Magazine. Slavery in the 21st Century In the midst of the worldwide economic boom, reports documenting modern-day slavery come from every corner of the globe. From Bangladesh to Brazil, from India to The Sudan, and even in the U.S., there are more people enslaved today than ever before in human history. Slavery-defined strictly as forced labour for little or no pay under the threat of violence-engulfs, by conservative estimates, 27 million people. Hidden at the underbelly of thriving global markets and often contributing to the general wealth and comfort of people around the world, contemporary slavery takes myriad forms, though most are different from the classic pattern known to Americans. The more notable-though by no means the only-cases of modern-day slavery include chattel slavery in Mauritania and The Sudan, debt bondage in Asia, and human trafficking worldwide. Socialized Medicine's Aches and Pains After a detailed examination by the World Health Organization (WHO) to assess the standards, responsiveness, and effectiveness of health systems in 191 countries, France was judged to have the best health care service in the world. The first-ever analysis of the world's health systems, published in the The World Health Report 2000, produced some surprising findings and revealed wide variations in performance. The United States, which spent more than any other nation on health care, was ranked 37th and trailed countries such as Colombia and Morocco, which had much lower levels of health spending. Italy, Spain, Oman, Austria, and Japan all captured spots in the top 10, whereas many African countries-dragged down by the high death rates caused by the AIDS epidemic-were among the poorest performers. The publication of the report came at a time when health systems around the world faced ever-increasing pressures. The triple effect of an aging population, which placed additional demands on health services; of medical advances, which produced new and usually more expensive drugs and treatments; and of a public with high expectations of what medicine could achieve-all combined to push up costs, particularly in the developed world. The strains produced by these pressures were seen most clearly in "socialized medicine," nationally funded health systems such as Great Britain's National Health Service (NHS). Many countries voiced concern over long waiting lists for treatment and deteriorating standards of care, but state-controlled budgets proved incapable of providing the level of care people expected. As a result, serious doubts were being raised about the ability of socialized medicine to provide what was seen by many as the civilized answer to health care provision in the 21st century. In Norway protests were staged in June outside the Storting (parliament) following a decision to raise charges for patients who saw their family doctor. Such charges had risen 40% in three years. In The Netherlands the government appointed a task force to report on the future of the Dutch health system as concern mounted about lengthening waiting lists, shortages in health staff, and budget restrictions. Following the deaths of several patients awaiting surgery, the Spanish government ordered that additional operating sessions be scheduled to reduce hospital waiting lists. In an attempt to control the ever-escalating budget for medication, the government in Spain also proposed an end to free prescription drugs for old-age pensioners. Doctors working in public hospitals in Israel imposed a series of sanctions over 18 weeks in an effort to gain a pay increase. The dispute led to the cancellation of 30,000 nonemergency operations and ended when the doctors accepted a 13% salary increase. The physicians also were given guarantees that a national review would be conducted of public medicine, including the possibility of allowing private medical services in public hospitals. Though France was judged to have the best health system in the world, that ranking did not make the country immune from these problems. Hospital staff staged demonstrations in February to protest staff shortages and budget restrictions. Meanwhile, Canadians were increasingly dissatisfied with their publicly funded health system-which was also plagued with long waiting lists-especially when Canadians could see that just across the border Americans were being treated much more quickly. A report published by the Canadian Institute for Health Information-Health Care in Canada 2000: A First Annual Report-revealed that more and more Canadians were dissatisfied, and it noted that between 1987 and 1997 the proportion of those who felt that the system could work properly after only minor changes were made fell from 56% to 20%. Problems included delays in treating seriously ill patients, extreme overcrowding of hospital emergency services, and shortages of staff and vital equipment. Canadian Prime Minister Jean Chrtien responded to concerns that the country's health system was failing by announcing a 35% increase in spending over the next five years. The Can$23.4 billion (about U.S. $15.6 billion) increase was welcomed, although there were warnings that even more money would be needed in the future. A similar solution had been fashioned in the U.K., where the NHS received the biggest funding increase in its history following widespread concern about the system's viability. The U.K. had some of the poorest cancer-survival rates, employed fewer medical specialists, and had a lower use of new drugs and medical technologies than most of its European neighbours. The NHS, which the British once believed was the envy of the world for establishing free access to high-quality health care for all, had been exhibiting all the signs of terminal decline. Owing to hospitals' inability to cope with demand during winter peaks, operations were canceled and waiting lists became lengthier. Expensive drugs were denied to those who needed them, and deteriorating standards of care were recorded across the country. These criticisms persuaded the British government to fund an extra 20 billion (about U.S. $30 billion) over the next five years to bring spending more into line with the European average. "The essence of a satisfactory health system is that the rich and the poor are treated alike, that poverty is not a disability and wealth is not an advantage." This was the view of Aneurin Bevan, the British politician who helped create the NHS in 1948. His vision also led to the expansion of socialized medicine, which raised money through taxes or social security contributions to pay for health care for all. It was never imagined, however, that equity would mean that everyone would suffer from the same deteriorating level of service and that reality would force a call for change. Though additional funding seemed likely to solve the existing problems in the U.K. and Canada in the short term, an escalation in costs could obliterate a long-term solution. For that reason, the British Medical Association embarked on a wide-ranging review of future funding options for the NHS. Socialized medicine was not the only system with problems. The U.S. was considered the Jekyll and Hyde of modern health care. It offered the best level of health care provision in the world, but in a system in which millions of uninsured people feared the consequences of falling ill. The WHO report found that the U.S. had the most responsive health service in the world and provided the most prompt attention, but when the fairness of the financing of health care was considered, it ranked 55th of the 191 countries. The United States, which spent almost twice as much as most European countries on health care, also found a need to try to reduce costs. The U.S. left cost containment to the marketplace, which over the past 20 years had led to the development of health maintenance organizations (HMOs). Although HMOs were privately run for-profit organizations, they worked in a similar fashion to socialized medicine, the state-run systems. HMOs provided medical care to large populations within tightly controlled budgets and often employed the doctors and nurses that supplied care. The persistent difficulty of meeting financial targets as demand for services constantly grew was demonstrated when Harvard Pilgrim Health Care, the largest HMO in New England, went into receivership earlier in the year. It was only one of a number of failures among HMOs in recent years. Americans also became increasingly angry at restrictions placed on their access to health care and accused some HMOs of denying them the care they needed. The problem was highlighted in June when the U.S. Supreme Court ruled against a woman who sued her HMO for failing to provide the best possible care. Cynthia Herdrich suffered a ruptured appendix days after she went to her HMO doctor complaining of abdominal pain. Herdrich had to wait eight days for the test at an HMO-affiliated hospital more than 80 km (50 mi) away. Her appendix ruptured prior to the test, and she won a $35,000 malpractice suit against the doctor and sued the HMO in a federal court. She claimed the arrangement that allowed doctors to keep a share of the HMO's profits gave them an incentive to act in their own interests rather than those of patients. The Supreme Court threw out the claim, however, and cited that "no HMO could survive without some incentive connecting physician reward with treatment rationing." In The World Health Report 2000, WHO explained the complexity of adopting a single health care model. "The world is currently experimenting with many variants and there is no clear way to proceed." WHO did, however, consider systems that funded health services through prepayment schemes such as taxes, insurance, or social security preferable to those that relied on patients' paying the costs of treatment when illness struck. The report stated that governments worldwide should embrace the "new universalism"-the establishment of essential services that would be available to all citizens-but cautioned, "Clearly limits exist on what governments can finance and on what services they can deliver. . . . If services are to be provided for all, then not all services can be provided." Bryan Christie is a freelance medical writer working in Edinburgh; he is a regular contributor to the British Medical Journal and to other medical publications in the U.K. The 2000 Election The U.S.'s tumultuous experiment with democracy over two centuries has produced a colourful record of conflict and decision, but the presidential election of 2000 will rank near the top of any list. Time magazine, exaggerating only slightly, dubbed it "the wildest election in history." It produced the country's fourth president who had lost the popular vote, and the first president who owed his victory directly to a decision by the U.S. Supreme Court. As the year began, presumptive nominees Vice Pres. Al Gore and Texas Gov. George W. Bush (see Biographies) were targets of spirited primary challenges from political mavericks. Former U.S. senator Bill Bradley of New Jersey failed to wean away any of the liberal Democratic pillars backing the vice president-organized labour, minorities, and women activists. Bradley lost the New Hampshire primary by a narrow 52-48% margin and never again came close to winning a state. U.S. Sen. John McCain of Arizona was a far more serious problem for Bush, whose tightly scripted message and regal campaigning satisfied party regulars but failed to excite less-partisan voters. Bush had prepared for a challenge from the conservative wing that never materialized. Instead, the moderate McCain rolled through New Hampshire on a bus dubbed the Straight Talk Express, charming journalists, selling campaign finance reform, and racking up a devastating 19-point victory. The reeling Bush forces then took off the gloves in South Carolina, employing surrogates to question war hero McCain's commitment to conservative values and party principles. The backlash from Bush's unpretty 11-point South Carolina win, however, helped carry McCain to victory the following week in Michigan, where independents and Democrats voted in large numbers. By the time the Bush campaign righted itself and ran out the clock, Bush's once-substantial advantage over Gore in funding and polls was gone. Political scientists were unanimous that, given peace and prosperity, the incumbent vice president should win easily. Gore suffered, however, from a pedantic personal style and his association with Pres. Bill Clinton. Bush, by contrast, was widely viewed as personable and attractive, but Democrats successfully raised concerns: did he have the experience and intellectual heft to be president? The GOP convention in Philadelphia was staged as a paean to ethnic diversity, a visual reminder of Bush's outreach to minorities and his "compassionate conservatism" campaign theme. That helped produce a double-digit poll lead for Bush. Gore countered with an energetic populist speech at the Democratic gathering in Los Angeles, his stage entrance punctuated by a long and passionate kiss with his wife, Tipper, that underlined a contrast with Clinton. Bush's lead soon disappeared, and Gore surged 10 points ahead. In September Bush's campaign tried to scuttle appearances scheduled by the bipartisan Commission on Presidential Debates, provoking outrage from journalists weary of carefully staged campaign events. Bush was forced to reverse field, the episode seeming to confirm his lack of confidence in any matchup with the more experienced Gore. The turning point in the campaign may have been the first debate in early October. Bush delivered a competent and affable performance, exceeding expectations, while Gore repeatedly interrupted, demanded extra time, sighed audibly, and grimaced while Bush was talking. After this overbearing spectacle the polls shifted yet again, with the Republican gradually retaking a substantial lead. Bush, however, appeared to run out of gas at the end. In the last week of the campaign, he was thrown on the defensive when news of a 1976 arrest for drunk driving surfaced, when he appeared to deny that Social Security was a government program, and when left-leaning supporters of Green Party candidate Ralph Nader (see Biographies) began to return to the Democratic fold. The result was, as one wag put it, a tie, a coin flip where the coin landed on its edge. On election night, in a debacle for television journalism, all commercial networks declared that Gore had won Florida. Within hours, though, they had placed Florida back in the undecided column, then awarded the state and the election to Bush, and then put the state and the election back in doubt. Bush's lead appeared to be as narrow as 400 votes out of 6.1 million cast in the state. Exit polls showed deep splits in the electorate. Gore eventually won the national popular vote by a margin of more than 500,000. Bush won among men, 53-42%, but Gore prevailed with women, 54-43%. Despite Bush's outreach, only about 9% of African Americans sided with the Republican. Bush won virtually the entire heartland of the country, while Gore won the West Coast and most northeastern and upper Midwestern states. The overall result was close because, aided by modern polling, both candidates had successfully presented a moderate platform that appealed to the vast American centre. Nonetheless, many voters still had doubts about personal qualities; a common evaluation was that "neither man made the sale." On November 8 both candidates immediately began flooding Florida with hundreds of lawyers and political operatives. Democrats challenged Bush's lead by starting recounts in several urban counties, claiming that inexpensive punch-card voting devices had failed to record intended Gore ballots. County officials were soon seen on television holding up ballots, eyeing "chads" with one, two, or three corners removed or searching for indentations that might reveal voter intent. Both sides replaced principle with expediency. Republicans, ordinarily states' rights advocates, eyed the Democratic Florida judiciary and began appealing to federal courts. Democrats moved to disqualify hundreds of military ballots from overseas on technicalities even as they vowed that "all votes must be counted." Nearly 50 individual lawsuits were filed challenging aspects of the Florida election. The Florida Supreme Court (all seven members nominated by Democratic governors) twice extended the recount process, saying that protecting the right to vote was more critical than observing a legislative-set timetable. The U.S. Supreme Court (seven of nine members nominated by Republican presidents) surprised virtually all experts by stepping in and overturning both rulings. In their final decision, seven justices declared the lack of uniform standards defining voter intent amounted to a denial of equal protection of the laws. That stopped the recount and effectively decided the contest-35 days after election day. At year's end the national economy was weakening, and polls showed that a substantial minority of citizens questioned Bush's legitimacy. Technically, Congress remained in Republican hands, but in reality it was deadlocked, divided almost evenly between the parties. The new president prepared to enter office with the weakest mandate to govern of any administration in more than a century. David C. Beckwith