CHAPTER 21: Newgenics
What now? The short answer is nobody knows. The world will not discover the latest human genetic trends in books like this one, but rather in the morning paper and on the evening news. Almost as soon as any author's page is typed, genetic advances redefine the realities, the language and the timelines. By creep and by leap, the world will be alternately shocked and lulled -- and then shocked again -- to learn how rapidly humanity and nature are changing.
Today's headline is tomorrow's footnote. In 1978, Louise Brown became the world's first test-tube baby and a braver new world shuddered. Since then, in vitro fertilization has become common reproductive therapy. In 1997, Dolly the cloned Scottish sheep captured cover stories and stirred acrimonious debate across the world. Shortly after that, several cows were cloned in Japan, but the news merely flashed across CNN as a fleeting text report behind the comical headline "Udderly Amazing." In 1998, the Chinese government launched a program to clone its pandas. Shortly thereafter, Spanish authorities approved cloning of a bucardo, a recently extinct mountain goat. In 2000, Virginia scientists cloned five pigs. Entire menageries are in various stages of being cloned, from monkeys to mastodons to family pets. [1]
Human clones are next. In late 2001, when editors were discussing this book, the experts insisted we were decades away from the first human clone. As chapters were being submitted, the prediction of "decades" shortened to "years." By the end of 2002, those same experts were debating whether any of several competing scientists had already successfully created the first cloned babies. There is no shortage of willing donors or parents, nor rumors to supply the field. Legislation enacted in several countries cannot address the international dimensions of the where, who and how of impregnation, gestation and conception itself. [2]
Predictions and timelines are little more than well-intentioned self-delusion. However, this much is certain: a precocious new genetic age has arrived. This genetic age, morphing at high velocity, can barely be comprehended by a world that doesn't even speak the language of genetic engineering. Certainly, the latest developments continuously flood a spectrum of scientific journals and symposia, prominent and obscure. Yet few can keep up with the moral, legal and technological implications, especially since much of the information is so technical.
At the same time, the consequences of genetic advance are obscured by hype and conspiratorial clamors. Adding more fog, human genetics is now in many ways dominated by capital investment, and many revelations are subject to the eighteen-month initial secrecy of patent applications, the protracted strictures of Wall Street financing and the permanence of corporate nondisclosure agreements. Many areas of human science are now trade secrets. Twentieth-century corporate philanthropy has given way to twenty-first-century corporate profits. Information is often controlled by public relations officers and patent attorneys. It takes a profoundly trained professional eye and a clear mind to separate fact from fantasy and blessings from menaces.
No one should fear the benefits of human reengineering that can obliterate terrible diseases, such as cystic fibrosis and Tay-Sachs. The list is long and genetic researchers are constantly laboring toward the next breakthrough. Every such medical advance is a long overdue miracle. Society should welcome corrective genetic therapies and improvements that will enhance life and better mankind.
Yet humanity should also be wary of a world where people are once again defined and divided by their genetic identities. If that happens, science- based discrimination and the desire for a master race may resurrect. This time it would be different. In the twenty-first century it will not be race, religion or nationality, but economics that determines which among us will dominate and thrive. Globalization and market forces will replace racist ideology and group prejudice to fashion mankind's coming genetic class destiny. If there is a new war against the weak it will not be about color, but about money. National emblems would bow to corporate logos.
Newgenics may rise like a phoenix from the ashes of eugenics and continue along the same route blazed in the last century. If it does, few will be able to clearly track the implications because the social and scientific revolutions will develop globally and corporately at the speed of a digital signal. The process will manifest as gradual genetics-based economic disenfranchisement. First, newgenics will create an uninsurable, unemployable and unfinanceable genetic underclass.
The process has already started.
***
Like eugenics, newgenics would begin by establishing genetic identity, which is already becoming a factor in society, much like ethnic identity and credit identity. DNA identity databanks are rapidly proliferating. The largest group of databanks warehouse the genetic identities of criminals, suspects, arrestees and unidentified individuals whose DNA is found at crime scenes. The Federal Bureau of Investigation's Combined National DNA Index System (CODIS) was inaugurated in 1990 and has been steadily data basing DNA from criminal encounters. All fifty states have now passed laws creating state databanks that feed CODOS using the FBI's software. By March of 2003, these state databanks were just becoming operational, but legal reviewers have already pointed out the state-to-state inconsistencies in collection and dissemination standards, as well as storage protocols. The FBI's databank, which in March of 2003 maintained more than 1.5 million profiles, is growing by some 100,000 profiles a month, and the Department of Justice has asked the FBI to prepare for up to fifty million. [3]
England's rapidly expanding National DNA Database is expected to hold DNA "prints" on three million individuals by 2004. Canada's newly-created databank stored some 23,000 samples as of March 2003, and adds more than a thousand profiles a month. Canada is also pioneering total robotic management and retrieval. China is building extensive databanks, employing more than a hundred DNA laboratories to process the samples. By March of 2003, national DNA databases had become active in Austria, Holland, Germany, Australia and many other countries. Local DNA dragnets in Germany, England, Australia and the United States have been launched by police to snare offenders who would otherwise never be identified. Such dragnets, which typically ask every citizen of a certain profile or geographical area to provide a DNA sample, are becoming more common. [4]
Police DNA databanks are a powerful and needed tool to help thwart crime and terrorism. They have not only trapped many criminals, they have also prompted the release of many wrongfully arrested or convicted. A number of death row inmates and long-term convicts have been freed only because of DNA analysis of previously untested evidence. Moreover, help ful medical information on individuals is already being discerned from police DNA "fingerprints." For example, British police DNA specialists have concluded that one of the ten DNA markers they analyze for criminal identification also carries information about diabetes. Information about various types of cancer has been derived from DNA fingerprints as well. [5]
The network of DNA databases will soon be global. Interpol conducts a regular International DNA Users Conference to proliferate and link police DNA databank systems worldwide. Soon every nation from Argentina to Zambia, and every local jurisdiction in between, will be able to tap into the international genetic network. [6]
While police DNA databanks are a necessity, they carry twenty-first-century problems. Each country will develop its own rules and regulations about storage, handling and access. There is as yet no body with the authority to set global standards for collection, maintenance or dissemination of DNA data. Quickly, society has learned that crime fighting is no longer the only reason to collect and organize D A fingerprints. Identification itself is a compelling issue. Military organizations now record DNA fingerprints of their soldiers. America's Armed Forces Repository of Specimen Samples, located in a facility outside Washington, maintains hundreds of thousands of profiles. The tomb of the unknown soldier will soon be a thing of the past. [7]
States are discussing local genetic identification banks for ordinary citizens as well. Connecticut's Department of Social Services already operates a special Biometric ID Project that stores digital fingerprints of its welfare recipients to combat widespread interstate welfare fraud. The Connecticut program currently only records digital scans of traditional fingerprints, but the agency has publicly indicated that stored biometric data could also include retinal scans and facial imaging. [8] Eventually, each state will probably develop its own biometric methodology, which would almost certainly include genetic identification. Such systems would ultimately proliferate down to the county and municipal levels, creating a diverse interoperable national network.
The events of September 11 only accelerated fascination with genetic identification. The technique is now widely studied as a weapon in the war against global terrorism. Think tanks have discussed a wide range of biometric recognition systems and smart cards to secure our society. Biometric databanks -- to include DNA fingerprints -- have been proposed for airports, immigration bureaus, customs stations, passport offices and even university programs for foreign students. Such systems would be deployed worldwide and could be used at airline counters and visa offices in countries across the world.
Genetic identification has also become a consumer commodity. Paternity suits, cultural and family ancestry claims, inheritance disputes and the simple fear of losing loved ones in terrorist attacks or massive calamities have caused many to obtain their own DNA information and store it personally or in private repositories. Genetic counseling is commonly advised for many couples who may be troubled by hereditary diseases or conditions. Such genetic screens are imperative for those carrying dreaded inherited diseases, such as Huntington's chorea, sickle-cell anemia, Tay-Sachs or a history of breast cancer. Registries are being built. Private labs now market their genetic testing.9 The field is proliferating in a global community, employing the Internet to enable all citizens from any country to contribute to and access various labs in Australia, the United States and England.
Soon DNA fingerprints will become as common as the traditional fingerprints first discovered by Galton. [10] He suspected they might reveal much about an individual. But he probably never expected that within a century his term for the unique sworls on one's fingertips would expand into the name for genetic identification that would reveal the secrets of a person's biological past and future.
Eventually, genetic databases will go far beyond the identification of mere individuals. The science will create family genetic profiles for use in litigation, health and employment that may function as credit bureaus do today. The day is coming when such family information will be routinely sought in conjunction with employment, insurance and credit granting.
The Medical Information Bureau (MIB) is the American insurance industry's massive databank that dispenses coded medical information and certain lifestyle traits on the millions of individuals who have applied for health and medical insurance. More than sixteen million individual records are stored at any given time. Records are retired after seven years. In their constant battle against fraud, the MIB enables insurance companies to double- check the veracity of applications. Like a credit bureau, the MIB collects information its insurance company members report, and dispenses it to them when they inquire. Since the 1970s, the MIB has included two codes to signify hereditary conditions, this reporter has learned. One code is for hereditary cardiovascular conditions, and the other is a general code to designate "other family hereditary medical conditions," according to MIB officials. As of March 2003, neither hereditary code is sub coded for any specified condition such as epilepsy, congestive heart failure or clinical anxiety, officials said. Instead, the codes are designed to alert insurers to seek additional information from their applicants. [11]
In a group interview with the databank's counsel, marketing director and manager, MIB officials repeatedly insisted the two codes did not signify a genetic predisposition to a health problem, but instead merely "a family hereditary" trait. Family hereditary codes, once gathered, are reported whether or not an individual applicant has shown any symptoms. The family's medical history itself, not the individual's condition, is the determining factor. MIB officials also insisted they would never search out and link other family members based on hereditary conditions. [12]
No DNA repository -- police, medical or governmental -- is currently linking family members. To do so would create modern-day, genetically-stigmatized Jukes or Kallikaks. It would be the first giant step down the road of newgenics. The financial ramifications are extraordinary and the potential for targeted exclusion is manifest. If the world sees such exclusions, it will probably see them first and most dramatically in the insurance industry.
Insurance companies vigorously claim they do not seek ancestral or genetic information. This is not true. In fact, the international insurance field considers ancestral and genetic information its newest high priority. The industry is now grappling with the notion of underwriting not only the individual applicant, but his family history as well. Insurers increasingly consider genetic traits "pre-existing conditions" that should either be excluded or factored into premiums. A healthy individual may be without symptoms, or asymptomatic, but descend from a family with a history of a disease. In the industry's view, that individual presumably knows his family history; the insurance company doesn't. Insurers call this disparity "asymmetrical information," and it is hotly discussed at numerous industry symposiums and in professional papers. Governments and privacy groups worldwide want to prohibit the acquisition and use of genetic testing. Many in the insurance world, however, argue that their industry cannot survive without such information, and the resulting coverage restrictions, exclusions and denials that would protect company liquidity. [13]
A June 2000 American Academy of Actuaries industry-only monograph entitled "Genetic Information and Medical Expense," obtained by this reporter, cautiously addressed the question. In a section headed "Asymmetrical Information," the monograph asked: "Would a ban on the use of genetic information merely prohibit insurers from asking for genetic tests, or would they also be barred from obtaining test results already known to the applicant? While a more encompassing ban may remove applicants' fears of genetically based denial of coverage, the imbalance of information would leave insurers at a disadvantage." The section concluded, "... biased selection would have a direct impact on premium rates, ultimately raising the cost of insurance to everyone." [14]
In the next section, entitled "Pre-existing Conditions," the monograph argued, "Such a ban [on genetic testing] could have more severe consequences over time, as genetic technology advances." In a series of attached potential "market scenarios," the monograph speculated about individuals with healthy heredities subsidizing those destined to become ill. In one scenario, the monograph stated, "The ultimate character of the market depends on the relative number of these 'genetically blessed' individuals." [15]
A Spring 2002 American Academy of Actuaries briefing paper entitled "The Use Of Genetic Information In Disability Income And Long- Term Care Insurance," obtained by this reporter, suggests that the insurance industry could become insolvent without the benefits of predictive testing. In a section labeled "Adverse Selection," the briefing paper declared, "Insurers maintain that the view of the consumer advocates conflicts with the economic realities of the voluntary insurance market. Insurers are concerned that if they were prohibited from obtaining genetic information from the medical records of applicants, then those applicants would know more about their genetic predisposition than the insurance company (asymmetric information), and more substandard and uninsurable individuals would qualify for insurance. Premiums could not be adjusted adequately to cover the deterioration of the insured population because the higher prices would drive out the healthy. As the insured population disproportionately became weighted toward those who were predisposed to certain genetic defects, experience would worsen and premiums would increase. The increase in premiums would further reduce the number of healthy policy-holders and could eventually cause the insurers to become insolvent." [16]
Insurance discrimination based on genetics has already become the subject of an active debate in Great Britain. British insurers were widely employing predictive genetic testing by the late 1990s to underwrite life and medical insurance, and utilizing the results to increase premiums and deny coverage. The science of such testing is by no means authoritative or even reliable, but it allows insurers to justify higher prices and exclusions. Complaints of genetic discrimination have already become widespread. A third of those polled from genetic disorder support groups in Britain reported difficulties obtaining insurance, compared to just 5 percent from a general population survey. Similarly, a U.S. study cited by the American insurance publication Risk Management found that 22 percent of nearly one thousand individuals reported genetic discrimination. A British Medical Journal study paper asserted, "Our findings suggest that in less clear cut instances, where genes confer an increased susceptibility rather than 100% or zero probability, some people might be charged high premiums that cannot be justified on the actuarial risk they present." [17]
Nearly three-quarters of a group surveyed by Britain's Human Genetics Commission (HGC) objected to insurer access to genetic testing. One man who tested positive for Huntington's told of being denied insurance when his genetic profile became known; later, when he did obtain a policy, it was five times more expensive. One forty-one-year-old London woman recalled that after her genetic report showed a gene associated with breast cancer, she was unable to buy life insurance. In consequence, when she attempted to purchase a home in 1995, it was more costly. Chairman of the HGC Helena Kennedy said: "Most of us are nervous and confused about where technology might be leading, and the potential challenges to privacy and confidentiality. We know from our survey that people are worried that these developments might lead to discrimination or exploitation, and are skeptical of the law's ability to keep up with human genetics." [18]
A Code of Practice for genetic testing by British insurers was established in 1997, but in 2001, Norwich Union Insurance, among other firms, admitted it had been using unapproved genetic tests for breast and ovarian cancers, as well as Alzheimer's. British insurers began widely utilizing genetic tests after a leading geneticist consulting for the industry's trade association recommended the action, a Norwich Union executive explained. The widespread concern in England is generation-to-generation discrimination pivoting not on race, color or religion, but on genetic caste. "We are concerned, of course," warned Dr. Michael Wilks, of the British Medical Association's Medical Ethics Committee, "that the more we go down the road of precision testing for specific patients for specific insurance policies the more likely we are to create a group who simply will not be insurable." Wilks called such a group a genetic "underclass." A member of Parliament characterized Norwich Union's actions as an attempt to construct a "genetic ghetto." [19]
The British government ultimately imposed an industry-wide moratorium permitting the use of just one type of test. In the subsequent three-year period, out of 800,000 Norwich policies, only 150 involved genetic tests. But British insurance industry sources argue that unless widespread genetic testing and access is restored, the industry and the health service will be overrun with claims. [20]
Moreover, some insurers may also want genetic data so they can use the information to rescind insurance, claiming that an individual fraudulently or even inadvertently omitted ancestral information from an application -- even if the insurance claim is unrelated to the medical condition. Precedents abound for such retroactive invalidations, albeit based on family health history rather than genetic testing. In a 1990 Quebec case, a man was killed in a car crash. He carried the gene for a degenerative disease, a form of myotonic dystrophy, and knew his father had suffered from the malady but omitted the information from his 1987 application for a $30,000 policy. His widow was denied a policy payment when Industrial Alliance, one of Quebec's largest insurers, prevailed in court, claiming fraud by omission. An Industrial Alliance attorney told this reporter that the company was aware the man came from a region known for a great deal of consanguinity and where myotonic dystrophy is common. Hence, the company's postcrash investigation bore fruit. [21]
The Industrial Alliance attorney added that such policy invalidations, based on applicants' statements, are common in Canada. A company attorney explained that his firm had even invalidated one car crash death when they learned the applicant indicated he was not a smoker, and a postcrash investigation revealed the man had actually smoked within the previous year. "Even my mother was angry at me for that one," the company attorney admitted. "She said, 'What does cigarettes have to do with the car crash?'" But, explained the attorney, under Quebec law, within the first two years of a life insurance policy, any material omission, deliberate or accidental, can be investigated to invalidate a life insurance claim. Mter two years, Quebec insurance companies are allowed to invalidate a policy if they can prove a deliberate omission. [22]
The Quebec precedent, which is now spreading to other countries, means that if a person does not possess his genetic information -- even innocently -- he is being omissive. On the other hand, possessing it makes the data automatically disclosable to the company at the point of application. Insurers worldwide argue that if they cannot require testing, they should be permitted access to the genetic information individuals will increasingly feel obligated to gather. Either way, genetics will soon be an underwriting factor in everyone's personal insurance.
Information from America's MIB, and repositories like it, is often used by insurers to detect omissive statements, this as a basis for denying claims and invalidating policies. The MIB cites combating application fraud as its chief mission. Ironically, many applicants simply do not know their ancestors' health conditions. For example, many American Jews descended from Europe do not know the exact health conditions of ancestors killed in the Holocaust or Eastern Europe's pogroms. Many African-Americans know little of their ancestors reared in slavery or abject twentieth-century poverty. Our mobile society includes many single-parent families where little is known about ancestral health problems. The paucity of genetic information is all the more reason for insurers to press for genetic bureaus to emulate the medical and credit bureaus they currently employ.
A cross-referenced genetic information bureau would permit insurers and financial institutions to create the commercial "genetic underclass" envisioned by critics. Insurers deny that such databanks are in the offing or even desired. Many continue to argue that the insurance community is simply not interested in genetics.
Yet the worldwide insurance industry is indeed rushing to integrate advanced genetics into their everyday business. In England, an insurance industry program called the UK Forum for Genetics and Insurance regularly brings genetic scientists and insurance executives together. The debate is an international one because all insurance is global. All risk -- no matter how local -- is studied, shared and reinsured by worldwide layers of the insurance industry. The International Actuarial Association's 2002 colloquium in Cancun highlighted genetics as one of its four main agenda items. "Are we expecting trouble for the insurance industry from genetic information?" an IAA program memo pointedly asked. MIB's industry intelligence website, as of March 2003, featured a "Special Section: Genetics" offering an in-depth survey of genetics and insurance, including writings on genetic discrimination, "Balancing Interests in the Use of Personal Genetic Data," and one major reinsurer's article entitled "The Future Will Not Wait for Us." [23]
For decades, insurers, realtors and financial institutions engaged in lucrative racial, sexual and geographic discrimination and preferential treatment known as redlining and greenlining. The terms derive from the colored lines drawn on maps by insurers and realtors to select neighborhoods for discrimination or preference. Such practices are now outlawed in many countries. But for genelining, the laws in various countries are vague, insufficient or nonexistent. Entire extended families of undesirable insureds could be identified with the same subtlety and secrecy with which geographic and ethnic undesirable insureds were identified a few decades ago. Corporate newgenics, blind to the color of one's flag, skin or religious creed, would be driven only by profit.
While insurers and banks may create a genetic underclass in finance, employers may create a genetic underclass among workers. AI; early as the 1960s, Dow Chemical undertook long-term genetic screening in search of mutagenic effects arising from its workplace. A 1982 federal government survey of several hundred U.S. companies found that 1.6 percent admitted they were utilizing genetic testing, mainly for hazardous workplace monitoring and screening new hires. In 1997, an American Management Association survey reportedly indicated that 6-10 percent of employers polled had asked their employees to submit to voluntary genetic testing. By and large, such screening was conducted openly and was necessary to protect workers from hazardous employment environments. [24] The increase in employer testing since the Human Genome Project was completed in June 2000 can only be imagined. How each company will use its information is neither standardized nor regulated.
In 1994, investigators discovered that the University of California's Lawrence Berkeley Lab went further than simply monitoring the workplace. At the suggestion of the U.S. Department of Energy, which largely funds the lab, medical officers tested employees' blood and urine samples for syphilis, sickle-cell and pregnancy. African-Americans and Latinos were often repeatedly tested for syphilis. The one white employee repeatedly tested for syphilis was married to an African-American. Employees sued. When asked by U.S. News & World Report why only minorities were singled out for repeated syphilis testing, a Berkeley Lab medical officer reportedly replied: "Because that's where the prevalence of the disease is. How come only people over a certain age would get an EKG? See the logic?" The man reportedly later denied he had made the inflammatory statement to U.S. News & World Report. [25]
A landmark federal court ruling in 1998 in favor of the Berkeley Lab employees established the Constitutional right of citizens to their genetic privacy. The court's opinion declared, "One can think of few subject areas more personal and more likely to implicate privacy interests than that of one's health or genetic makeup." The lab settled for $2.2 million in 2000 and deleted the employee information from its computers. [26]
Burlington Santa Fe, one of North America's largest railroads, went a step further in an attempt to stem soaring carpal tunnel claims by employees. Its medical director had read two medical journal articles on carpal tunnel, including one that indicated a genetic predisposition for the syndrome. In March of 2000, Burlington launched a program of surreptitious genetic testing of thirty-five employees making claims for carpal tunnel to determine whether they possessed genetic predisposition. Tests on some twenty employees were actually completed. The intent was to help the company deny carpal tunnel claims. [27]
Burlington's medical director selected Athena Diagnostics, the nation's premier genetic testing laboratory, to analyze the tests. Athena annually performs some 70,000 doctor-referred genetic tests for conditions such as hearing loss, movement disorders, epilepsy, mental retardation and carpal tunnel, a lab source told this reporter. The lab did not understand the purpose of Burlington's testing, a lab source said. Once they learned it was not for therapeutic but insurance purposes, "we were dismayed," a senior Athena executive told this reporter. Burlington was sued on a Friday afternoon in February 2001. Senior executives spent a frantic weekend reviewing the charges and settled by Monday with a $2.2 million payout to employees. Athena soon implemented safeguards such as requiring a signed patient authorization. But according to a company source, Athena still accepts genetic test requests from any licensed physician -- whether on behalf of an individual, insurance company or attorney -- and from any licensed lab in the U.S. or overseas. [28]
In the late nineties, government officials in Hong Kong refused to hire two men and fired a third after learning that each had a schizophrenic parent. The men had variously worked as a fireman, an ambulance worker and a customs officer. At first, the men were not told why the actions were taken. Government officials claimed the men were not fit for work because their parentage suggested a 10 percent chance they would also become schizophrenic. In fact, the officials had misread a genetic textbook; in reality there was only a 4 percent chance the employees would develop schizophrenia at their ages, compared to 1 percent for the general population. The three men sued. The judge stated that the "genetic liability to develop the disease their parent suffers from does not present a real risk to safety at either place of employment" and awarded the three $2.8 million in damages. [29] There was no genetic test involved in these three cases, just a review of the employees' written personnel files. But the incident again illustrates the danger of genetic information being misinterpreted and abused by local officials and corporate executives who have the power to discriminate.
***
Are national genetic databanks of all citizens coming? Sir Alec Jeffreys, the founder of DNA fingerprinting, originally believed that DNA fingerprints should be limited to criminals. But late in 2002, he changed his mind and declared that every person's profile should be added to the databank. Former New York City mayor Rudolph Giuliani has urged that a DNA fingerprint be recorded for every American at birth. [30] That day is coming.
In 1998, Iceland created the world's first national DNA database of its citizens. Almost all of its 275,000 citizens trace their lineages to the original Nordic Vikings of a prior millennium. In a unique arrangement, Iceland's national genetic code was sold to the genetic research and pharmacogenetic industries through an entity called deCODE Genetics. Less than 8 percent of Iceland's population opted out of the voluntary program, hence deCODE possesses virtually a complete national genetic and hereditary portrait ofIceland. Scientists at deCODE are currently utilizing the information in their study of a range of debilitating conditions, including respiratory and muscular diseases. Safeguards have been built into the program to conceal individuals' names. But at least one Icelander has sued the government to have her father's genetic history removed. As of March 2003, the case is still winding its way through Icelandic courts. Iceland's national genomic information will be made available to a wide variety of scientific, commercial and governmental entities in an Internet-based system that employs massive data storage drives codenamed "Shark." [31]
One main company manages and controls Iceland's genetic data. That company is already positioned to become the worldwide manager and disseminator of all genomic information globally. In anticipation of that day, the company currently operates genomic offices in California, New York, Zurich, Haifa, New Delhi and Tokyo. The name of the company is IBM. Its Iceland project operates under a division known as "Life Services -- Nordic." [32]
Estonia became the second nation to databank its entire population. In 2001, Estonia created the Estonia Genome Project to capture the genetic profiles of its 1.4 million citizens. A biotechnology industry article cited by the government's website explains, "Unlike remote Iceland, Estonia has long been a European stomping ground, ruled by a succession of Russian, Swedish, German, and Danish invaders who left their genetic heritage. Estonia's ethnic mix thus could be a major draw for pharmaceutical companies that want to find disease genes common to most Europeans." [33]
The tiny Polynesian nation of Tonga sold the information on its unique gene pool to Autogen, an Australian genetic research firm, in 2000. Tonga's 170 islands host a group of some 108,000 natives isolated for more than three millennia. Autogen was quoted as explaining its interest in Tonga's population: "The less mixture of inter-racial marriage, the more likely you are to be able to determine a particular gene that may be responsible for a particular disease, whether it's breast cancer or whether it's kidney disease." [34]
After reevaluation the arrangement between Tonga and Autogen was cancelled. Autogen instead focused on a Tasmanian genetic repository. "Tasmania is one of only a few populations in the world where up to seven-generation family pedigrees are available," the company announced. "This makes it an ideal location to study the genetics of complex diseases such as obesity and diabetes." [35]
In England, the UK Biobank recently opened as a repository for the medical information and genetic data of a half million volunteers. More commercial initiatives are underway to secure national genetic information around the world using ethnic, national, racial and even religious parameters. The pharmaceutical companies, governmental agencies and research foundations that operate these databanks will interconnect them globally. The devoted men and women laboring on these national projects are joining research hands to create new disease-fighting drugs, unlock the mysteries of hereditary disease and improve the quality of human life. In the process, prodigious masses of individual genetic information are being gathered. This data can be exchanged and retrieved at the speed of light from a computer and even downloaded to a cell phone. [36]
Lawmakers worldwide recognize both the great potential to mankind and the profound dangers. In America, the Genetic Anti-Discrimination Bill, which would prohibit genetic testing in group insurance and employment, has been percolating in Congress in various forms for years. In previous anti-discrimination laws, Congress has sought to remedy entrenched injustice. But in this case one of the bill's sponsors, U.S. Representative Louise Slaughter of New York, described the proposed legislation as "prophylactic," since Congress can hardly imagine what genetic misuses are in store. As of March 2003 the bill was stalled. [37]
Other countries are also grappling with protective legislation. As of March 2003, Finland and Sweden have been debating legislation for years. Denmark, however, has already banned insurance companies from utilizing genetic information. Employers in Austria are prohibited from utilizing employee genetic data obtained from any source. French bioethics legislation prohibits access by employers and insurance companies. [38]
But in reality, there are so many uses for genetic information -- proper and improper, obtainable from so many globalized sources, in so many for mats, employing such diverse and fast-moving technical and scientific jargon -- that drafting genuine protective legislation is frustrating to lawmakers and genetic privacy groups alike. Is a paper notation of a history of heart disease in a family the same as a genetic predisposition? Is a cholesterol test genetic? Is bloodwork genetic testing? Is information imported from one country governed by another country's laws? Japanese employers utilize genetic labs in America; whose safeguards on access, dissemination and use govern? What if the origin and destination is cyberspace? If an individual knows certain genetic information, why shouldn't he disclose it to insurance companies and employers like any other required medical information?
The problem is growing exponentially. "We need to stop genetic discrimination before it becomes widespread," Representative Louise Slaughter told this reporter. "The U.S. Congress has been debating my legislation for over seven years. Genetic discrimination is already occurring. If we can't pass a ban on these practices today, what are we going to do as the science becomes more complex? It is crucial that we, as a nation, state unequivocally that genetic discrimination is wrong and will not be tolerated." [39] Like-minded legislators and advocates in many countries echo those words.
***
Prominent voices in the genetic technology field believe that mankind is destined for a genetic divide that will yield a superior race or species to exercise dominion over an inferior subset of humanity. They speak of "self-directed evolution" in which genetic technology is harnessed to immeasurably correct humanity -- and then immeasurably enhance it. Correction is already underway. So much is possible: genetic therapies, embryo screening in cases of inherited disease and even modification of the genes responsible for adverse behaviors, such as aggression and gambling addiction. Even more exotic technologies will permit healthier babies and stronger, more capable individuals in ways society never dreamed of before the Human Genome Project was completed. These improvements are coming this decade. Some are available now.
But correction will not be cheap. Only the affluent who can today afford personalized elective health care will be able to afford expensive genetic correction. Hence, economic class is destined to be associated with genetic improvement. If the genetically "corrected" and endowed are favored for employment, insurance, credit and the other benefits of society, then that will only increase their advantages. But over whom will these advantages be gained? Those who worry about "genelining," "genetic ghettos" and a "genetic underclass" see a sharp societal gulf looming ahead to rival the current inequities of the health care and judicial systems. The vogue term designer babies itself connotes wealth.
The term designer babies is by and large just emblematic of the idea that genetic technology can do more than merely correct the frail aspects of human existence. It can redress nature's essential randomness. Purely elective changes are in the offing. The industry argues over the details, but many assure that within our decade, depending upon the family and the circumstances, height, weight and even eye color will become elective. Gender selection has been a fact of birth for years with a success rate of up to 91 percent for those who use it. [40]
It goes further -- much further. A deaf lesbian couple in the Washington, D.C., area sought sperm from a deaf man determined to produce a deaf baby because they felt better equipped to parent such a child. A child was indeed born and the couple rejoiced when an audiology test showed that the baby was deaf. A dwarf couple reportedly wants to design a dwarf child. A Texas couple reportedly wants to engineer a baby who will grow up to be a large football player. One West Coast sperm bank caters exclusively to Americans who desire Scandinavian sperm from select and screened Nordics. [41]
All of us want to improve the quality of our children's futures. But now the options for purely cosmetic improvements are endless. A commercialized, globalized genetic industry will find a way and a jurisdiction. It will be an international challenge to successfully regulate such genetic tampering and the permutations possible because few can keep up with the moment-to- moment technology.
It goes much further than designer babies. Mass social engineering is still being advocated by eminent voices in the genetics community. Celebrated geneticist James Watson, codiscoverer of the double helix and president of Cold Spring Harbor Laboratories, told a British film crew in 2003, "If you are really stupid, I would call that a disease. The lower 10 per cent who really have difficulty, even in elementary school, what's the cause of it? A lot of people would like to say, 'Well, poverty, things like that.' It probably isn't. So I'd like to get rid of that, to help the lower 10 per cent." [42] For the first half of the twentieth century, Cold Spring Harbor focused on the "submerged tenth"; apparently, the passion has not completely dissipated.
Following in the footsteps of Galton, who once amused himself by plotting the geographic distribution of pretty women in England, Watson also told the film crew, "People say it would be terrible if we made all girls pretty. I think it would be great." Watson gave no indication of what the standard for beauty would be. [43]
Some who speak of human cloning speak of mass replication of a perfected species. That is nothing less than a return to the campaign to create a master race -- but now aided by computers, digital communications and a globalized commercial infrastructure to accelerate the process. Some of America's leading thinkers on genetic evolution believe that within a few hundred years, the world will indeed be divided into the "genetically endowed" -- or "GenRich" as some call them -- and those who will serve them, almost like the worker bees Davenport envisioned. [44] Advocates of the genetic divide encourage it as a matter of personal choice, and argue that the same man who purchases eyeglasses, tutors his child or seeks medical attention to conquer his biological limitations is destined to take the next step and achieve genetic superiority. This is not the philosophy as much as the raison d'etre of newgenics.
It will transform the human species as we know it. Transgenic creatures -- created from two or more species -- are now commonplace. Genomic engineers have implanted a human embryo in a cow. In British Columbia, fish hatcheries have engineered an oversized salmon dubbed "Frankenfish" that is more profitable to raise. Geneticists have inserted the jellyfish's gene for luminescence into rhesus monkey DNA, creating a monkey that glows in the dark; the creature was named ANDi for "inserted DNA" in reverse. No one can successfully legislate or regulate experimentation on monkeys. In the suburbs of Washington, D.C., J. Craig Venter, one of the scientists who led the efforts to map the human genome, has announced plans to create a new form of bacterial life to aid in hydrogen energy production. [45]
Bioethicists are of little help in this hurtling new world. The still emerging field of bioethics includes self-ordained experts who grant interviews to television talk shows and newspapers even as they consult as scientific advisors to the very corporations under question. The do's and don'ts of genetic tinkering are being revised almost daily as the technology breeds an ever-evolving crop of moral, legal and social challenges that virtually redefine life itself.
It will take a global consensus to legislate against genetic abuse because no single country's law can by itself anticipate the evolving inter-collaborative nature of global genomics. Only one precept can prevent the dream of twentieth-century eugenics from finding fulfillment in twenty-first-century genetic engineering: no matter how far or how fast the science develops, nothing should be done anywhere by anyone to exclude, infringe, repress or harm an individual based on his or her genetic makeup. Only then can humankind be assured that there will be no new war against the weak.