by Edwin Black
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. As 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 work-place. 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.
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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 citiz
ens 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 of Iceland. 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 formats, 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 information39
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.
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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 immeasur-ably 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 in
deed 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
