This technology is enabling employers, insurers, financial institutions, and others to create genetic dossiers on each of us--portending a "genetic divide" no less abhorrent than separating people by race or religion.
by Edwin Black
railroad company secretly analyzes DNA samples of its employees to identify those with a genetic predisposition for carpal tunnel syndrome in order to deny work injury claims. A Quebec man dies in an automobile crash, but his life insurance payout is canceled when the company learns that he was born in a Canadian region with a high rate of inherited myotonic dystrophy, a degenerative genetic disease causing a debilitating relaxation of the muscles. Today some employers, insurers, realtors, and financial institutions not only examine their applicants but also their ancestors before deciding on employability and financial viability. "Newgenics" is unfolding before our eyes, creating a genetic divide, which, if successful, may create an uninsurable, unemployable, and unfinanceable genetic underclass.
In the decades after WW II, genetic research aimed at wiping out such horrible diseases as Tay-Sachs and cystic fibrosis elevated the field of human genetics to medical miracle stature. Genetic therapies that eradicate disease, enhance life, and better humankind should be welcomed. But with these advances comes a threat as great as its precursor--the eugenics movement of the first half of the 20th century that attempted to create a superior human race through genetic engineering and, ultimately, genocide, after which it was discredited. Today the threat does not originate with racists and nationalists, but with global corporations seeking to harness this technology to maximize profits.
In the late nineties, great advances in decoding the human genome through computerization enabled companies to compile genetic information on individuals throughout the world. The international insurance field, in particular, has made the gathering of ancestral and genetic information its highest priority. Insurers want to avoid instances of what they term "asymmetrical information"--when the client knows, but the insurance company does not, that he or she is related to someone with a history of a particular disease or disorder. Without acquiring information based on genetic testing, insurance industry experts say, the industry cannot remain solvent in the long run. In June 2000, for example, the American Academy of Actuaries issued an internal industry monograph entitled "Genetic Information and Medical Expense" painting one market scenario in which the insurance industry's financial health "depends on the relative number of these 'genetically blessed' individuals"--that is, people with superior genetic characteristics. And in spring 2002 the Academy released a briefing paper suggesting that the insurance industry risked bankruptcy without the benefits of predictive testing: "[If insurance companies] were prohibited from obtaining genetic information from the medical records of applicants, then...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."
What's more, the insurance industry's medical databank, the massive Medical Information Bureau (MIB), already stores coded information on some 13 million Americans, including two codes for what MIB terms "family hereditary history." MIB defensively insists its family hereditary codes are not "genetic codes" and that it has no interest in genetic information. Nevertheless, in March 2003 MIB's industry intelligence website featured a "Special Section: Genetics" which offered an in-depth survey of genetics and insurance, including a piece on genetic discrimination--"Balancing Interests in the Use of Personal Genetic Data"--and an article by a major reinsurer, "The Future Will Not Wait for Us," which proclaimed: "regardless of our personal opinions, this budding, barely 25-year-old technology is already exerting a considerable influence on our business today." (Last spring, following inquiries by this reporter, MIB removed its genetic web pages.) If the insurance industry decides to begin cross-referencing individual and family genetic data, MIB now has the infrastructure and expertise to do so. MIB executives, however, bristle at the very suggestion.
Precedents exist. Insurance discrimination based on genetics has been a hot-button issue in Great Britain since the late 1990s, when British insurers began utilizing the results of genetic testing to increase premiums for some and deny coverage for others. 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. One British 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. A 41-year-old London woman complained that after her genetic report indicated a gene associated with breast cancer, she was unable to buy life insurance, and when she attempted to purchase a home, it was more costly because of her uninsurability.
"We are concerned, of course," warns 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 referred to such a group as a genetic "underclass." A member of Parliament characterized the insurance industry's actions as an attempt to construct a "genetic ghetto."
American employers have been making use of their workers' DNA data since the 1960s, when it was revealed by the U.S. Office of Technology Assessment that the Dow Chemical Company had undertaken long-term genetic screening and monitoring of employees to protect workers from mutagenic effects, such as chemically induced cancer, in the workplace. A 1982 federal government survey of several hundred U.S. companies found that only 1.6 percent admitted to having utilized genetic testing, mainly for hazardous workplace monitoring and screening new hires. But fifteen years later, in 1997, the American Management Association's annual survey of companies reportedly indicated that 6-10 percent of employers polled had asked their employees to submit to voluntary genetic testing. And in 1998 the AMA found that as many as fifty-two of its largest employer members had engaged in genetic testing. Although this screening and monitoring had been conducted openly and generally for the stated purpose of protecting workers from hazardous employment environments, under current law each company could use this information for any purpose.
The University of California's Lawrence Berkeley Lab, an important center of pure research in the field of high-energy physics, went further than simply monitoring the workplace. For more than thirty-five years, at the behest of the U.S. Department of Energy, the lab's largest funder, Berkeley medical officers had been testing employees' blood and urine samples for syphilis, sickle-cell, and pregnancy, calling the tests "routine health screening and maintenance." African Americans and Latinos in particular were tested repeatedly for syphilis, and the one white employee who had been subjected to numerous retests for syphilis was married to an African American. Using evidence discovered by private investigators, in 1995 Lawrence Berkeley Lab employees filed a class-action suit against the lab, its medical staff, and government officials, seeking injunctive relief and monetary damages. In a landmark federal case, the court ruled in favor of the Berkeley Lab employees, stating that citizens have a constitutional right to genetic privacy. The judge 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.
Two years ago, in an attempt to stem employees' soaring carpal-tunnel claims, Burlington Santa Fe, one of North America's largest railroads, secretly analyzed workers' DNA samples in a misguided attempt to identify those with a genetic predisposition for the condition. Burlington's medical director selected Athena Diagnostics, the nation's premier genetic testing laboratory, to conduct the analysis. In February 2001, Burlington employees sued the railroad and, like the Berkeley Lab plaintiffs, received a settlement totaling more than two million dollars. 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.
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 illegal throughout the United States. But laws against "genelining"--discrimination on the basis of one's DNA profile--are largely nonexistent.
National DNA databanks, such as the ones in Iceland, Canada, England, and the United States, have already collected DNA profiles on millions of individuals in their respective countries, gathering the information either from police programs or giant health and genetic identification projects. The company best positioned to become the major manager and disseminator of all genomic information globally is International Business Machines. IBM, the corporation that innovated and organized eugenic and other personal identification for Nazi Germany, operates its largest genomic program in Iceland, its "Life Services-Nordic" division having been granted access to the country's national comprehensive DNA databank. Not only does IBM oversee genomic offices in California, New York, Zurich, Haifa, New Delhi, and Tokyo, and manage all of the information, it transmits it to clients' computers worldwide--and can even broadcast data to a cell phone.
Federal anti-genetic discrimination legislation is expected to be signed into law by the end of 2003. But with advances in genomic science and the hyper-commercialization of genetic information accelerating so fast and on so many fronts, it is unlikely that efforts to control or regulate these technologies will keep pace. The newgenics age is upon us.
Edwin Black is the author of the just-released War Against the Weak: Eugenics and America's Campaign to Create a Master Race (Four Walls Eight Windows). The American Society of Journalists and Authors awarded his previous book, IBM and the Holocaust, best book of 2001.
Copyright © 2003, Union of American Hebrew Congregations