A New Twist in Employment Law: the Loss of DNA Privacy

It is difficult to imagine anything more personal and private than our DNA, the genetic code that is at the root of our physical development and appearance. In the last few years, scientists have made fantastic strides in their ability to decipher the human genetic code. They are using this knowledge to better understand the origins of different diseases, and in some cases, to identify people who face an increased risk of developing certain diseases.

As scientists blaze their way through the jungle of genetic information, marking new discoveries and potentially valuable avenues for exploration, health insurance companies and employers are close on their heels. Many physical conditions that have a genetic origin—Alzheimer's, sickle cell anemia, even obesity—are extremely expensive to treat. As we've seen, insurance companies don't want to cover individuals with long-term illnesses, since they need to pay out more to settle claims, and employers prefer not to hire or keep such workers, since their claims drive up the employer's insurance premiums or self-insurance costs. As the sophistication of genetic testing improves and researchers grow more confident about the relationship between certain genes and specific medical conditions, the threat of genetic bias will steadily increase.

The Human Genome Project

The first linking of genetics and work occurred in 1938, when geneticist J.B.S. Haldane discovered that not all workers exposed to the same conditions contracted the same diseases. Based on his observations, Haldane recommended that people with a history of or predisposition to bronchitis not be allowed to enter the pottery industry. ^[19] By the 1960s, scientists had more formal evidence for the theory that certain genetic traits could make individuals extremely susceptible to workplace diseases.

Despite the theoretical advances, the level of genetic testing in the workplace has remained quite low, in large part due to the cost, the uncertainty of the results, and the strong disapproval of such tests among workers. Congress's Office of Technology Assessment found that only 1.6 percent of the nation's 500 largest industrial companies did any kind of genetic testing in 1983, and 5 percent in 1989. A decade later, in 1999, an American Management Association survey initially indicated that 5.7 percent of its 10,000 members conducted genetic testing. When the AMA did follow-up interviews with human resource departments, however, it became clear that the definition of "genetic testing" was not well understood—many respondents had included any test that required blood, while others had included any test for disease. When the correct definition was applied, the AMA concluded that only one percent of its members had true genetic testing programs. However, as many as 14 percent of AMA members include genetic testing as part of a preemployment medical exam in order to determine susceptibility to workplace conditions.

The traditional impediments to genetic testing—cost and the utility of the results—are vanishing quickly. There are already relatively inexpensive tests for a genetic predisposition to Huntington's disease, alcoholism, and various types of cancer. In addition, a massive research project is rapidly expanding our understanding of the connection between our genes and disease. As that pool of knowledge increases, employers will be increasingly tempted to draw a connection between your genetic make-up and your likely cost to the organization in health insurance premiums and medical costs.

The primary engine driving the advances in genetic testing is the Human Genome Project (HGP), a thirteen-year-old collaboration between the U.S. Department of Energy and the National Institutes of Health. Begun in 1990, the HGP is an organized effort to discover and map each of the 30,000 to 35,000 human genes contained in our DNA. Even more ambitiously, the HGP hopes to correctly identify the sequence of the more than 3 billion chemical base pairs that make up those genes and ultimately determine their function.

As the HGP works toward those two goals, it is also developing tools for storing the data, creating and improving the tools for genetic analysis, and establishing protocols and licensing procedures to transfer genetic information and technology to the private sector. Perhaps most importantly, the HGP is actively evaluating the ethical, legal, and social issues (ELSI) that arise out of genetic research. ^[20]

Thanks in large part to advances in computer technology, the mapping of the human genome has gone much faster than anticipated. A rough draft of the map was completed in June 2001, and scientists expect to have a polished version completed in 2003, two years ahead of the planned fifteen-year completion date.

One of the expected benefits of the HGP will be to help researchers identify which of our genes are responsible for different medical conditions and diseases. Already, scientists are able to test for a wide range of genetically-based illnesses, including:

• Amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease)

• Alzheimer's disease

• Inherited breast and ovarian cancer

• Cystic fibrosis

• Huntington's disease

• Polycystic (adult) kidney disease

• Sickle cell disease ^[21]

Most recently, Drs. Stephen B. Liggett and Lynne E. Wagoner of the University of Cincinnati published a paper in the New England Journal of Medicine announcing their discovery that people who inherit variants of two specific genes are ten times more likely to develop congestive heart failure. ^[22] While the discovery offers hope for dealing with one of the nation's most expensive medical problems—more people are hospitalized for congestive heart failure each year than all cancers combined—it also underscores the potential scope of genetic testing.

The same phenomenal advances in computer technology that are aiding in the identification of the human genome are also making genetic testing both inexpensive and deceptively easy to do. Already, a variety of companies are marketing devices that can be used in a doctor's office to test for specific genetic abnormalities, most of which report their results in just a few minutes.

These devices use a new tool called a biochip to break apart a DNA chain and look for predetermined genetic combinations. One variation, called a microarray, is manufactured by etching a complex series of walls, grooves, and pillars into a small piece of glass. A tiny electrical current pushes a prepared sample of DNA through the etched channels in the microarray. Once the DNA has been pushed as far as it can through the tiny maze, the chip is placed in an analyzer to see if the maze has trapped any of the DNA fragments being sought.

Another biochip variant, known as a DNA array, is a combination of circuitry and genetic material, in which specific DNA fragments are embedded in the glass chip as it is being manufactured. As with the microarray, a DNA sample is pushed across the chip using a weak electrical field. If any of the DNA in the sample matches the DNA embedded in the chip, the sample DNA will bond to it. Once the sample has moved through the entire array, the biochip analyzer can determine if any of the embedded DNA fragments have captured material from the sample.

Despite the reality that the tests can't yet accomplish what some employers hope that they can, companies are becoming increasingly enthusiastic about the possibility of testing their employees' genes for signs that they might develop an expensive illness or be susceptible to diseases resulting from the work environment. More often than not, the presence of a genetic marker in your DNA is merely an indication of a predisposition toward a particular disease, not a guarantee that you will contract it. Nonetheless, genetic discrimination has the potential to be a major social problem in the near future.

Despite the still murkily understood connection between genes and disease, at least one company has already turned to genetic testing in an effort to cut down on both medical costs and worker compensation claims. The secret testing came to light when a railroad worker's union filed a lawsuit against the Burlington Northern Santa Fe (BNSF) railroad in February 2001, alleging that the company was secretly conducting genetic testing on its employees' blood.

BNSF's testing program was discovered when Gary Avery, a track laborer for the railroad, returned to work after successful surgery to relieve a carpal tunnel condition. Avery received a letter from BNSF instructing him to have seven vials of blood drawn for a blood test. Avery showed the letter to his wife Janice, a registered nurse, who immediately questioned why so much blood was being drawn. When she called BNSF, she was told that the blood was being drawn for a "genetic test."

According to the union's lawsuit, BNSF was attempting to show that its employees who developed carpal tunnel syndrome were genetically predisposed to do so. Typically, an employer is required to pay worker compensation claims for injuries that occur on the job; BNSF hoped to argue that it was not liable for carpal tunnel claims because the workers who developed the condition would have done so regardless of where they were working. In addition to the union lawsuits, BNSF was sued by the Equal Employment Opportunity Commission under the Americans with Disabilities Act, which argued that simply gathering genetic material from employees constitutes a violation of the ADA. On May 9, 2002, the parties reached a mediated settlement in which BNSF agreed to pay thirty-six workers a total of $2.2 million for conducting the secret testing. While not admitting any wrongdoing under the ADA, BNSF also agreed to discontinue the practice in the future.

BNSF's effort to find a genetic basis for carpal tunnel syndrome illustrates the uninformed hype that surrounds genetic testing. In fact, medical experts believe that there is not any genetic predisposition for a condition like carpal tunnel syndrome, which is brought on by excessive repetitive motion. While the genetic testing by BNSF is the only case to come to light so far, it is highly unlikely that BNSF will be the last company to attempt to use genetic information to weed out employees at risk for expensive physical conditions.

Public concern over the invasiveness of genetic testing is amply reflected in the speed with which many state legislatures have acted to protect genetic privacy. As of February 2001, thirty-seven of the fifty states had adopted legislation to outlaw genetic discrimination by insurance companies, and thirty-one now forbid genetic discrimination in employment.

The federal government has also begun to look at this issue, although so far it has limited its protection to federal employees. On February 8, 2000, President Clinton signed Executive Order 13145 (appropriately enough, the first to be issued in the twenty-first century), which bars discrimination in federal employment based on genetic information:

It is the policy of the Government of the United States to provide equal employment opportunity in Federal employment for all qualified persons and to prohibit discrimination against employees based on protected genetic information, or information about a request for or the receipt of genetic services. This policy of equal opportunity applies to every aspect of Federal employment. ^[23]

President Clinton's action was spurred in part by reports of secret blood testing at the Lawrence Berkeley Laboratory. Health and privacy activists hoped that the news (and in particular, its racial overtones) would spur Congressional action, but various bills introduced to ban genetic discrimination by private employers have failed to gain much traction.

The bills have languished in part because of the limited attention given to domestic issues following the terrorist attacks, but also because the bills are strenuously opposed by the insurance industry and other business groups. Insurance companies in particular are concerned about the potential for Congress to limit the industry's ability to use a person's medical records, including her genetic predispositions, to establish her insurance premiums—or to decide whether to cover her at all.

The Vial Future of Employment?

As anyone with an interest in modern criminal procedures is aware, the use of DNA to identify criminals (and in many cases, to free wrongfully convicted individuals) is a burgeoning area. All fifty states have passed laws to require blood sampling and DNA identification of certain classes of felons, and in 1992, the Federal Bureau of Investigation established the Combined DNA Index System (CODIS) to help states match DNA from crime scenes to other crime scenes or individuals with DNA on file in the system.

Currently unexplored is the potential for cooperation between employers and law enforcement. Fingerprints are already required from applicants for certain types of jobs. It seems a relatively minor leap to expand the statute to require job applicants to get a clean bill of health, so to speak, from CODIS before starting work.

One area, at least, where genetics will take much longer to have any particular impact is in the day-to-day identification of employees. While DNA profiles are proving to be a powerful tool in criminal investigations, the process of doing a complete genetic profile is currently much too time-consuming and expensive for DNA testing to serve as a biometric identifier for workplace security. Compared with the effort required to determine if you have a particular genetic anomaly, the process of parsing your genetic code to the level of detail required to distinguish you from someone else is far more complicated, intricate, and time-consuming.

Given the speed with which technology advances, however, it is not hard to imagine a future in which in order to get to your desk at certain high-security facilities, your DNA profile will have to match the DNA profile stored in the facility's central database. The first steps in this direction have been taken by a Phoenix, Arizona, company called SecureCard Technologies, which manufactures the Gene Card™, which the company describes as "the first DNA identification card in the world." The digitally printed card contains a smart chip, a full-color photo, various identifying information, a scan of the employee's right thumbprint, and a profile of the employee's DNA. Right now, it takes two to three weeks to create a Gene Card™ for a new employee, and the DNA profile is of limited utility, since there's no available device to check his DNA profile in the lobby of his office and compare it to the information on the card.

As genetic testing equipment becomes more efficient, it's not difficult to imagine a day when a popular biometric security device will painlessly remove a few cells from the tip of your finger, extract the DNA, analyze it, and compare the results to a DNA profile established when you were hired. Two factors might slow the adoption of DNA verification equipment. One is that DNA is not actually the most distinctive biometric identifier; for example, identical twins have identical DNA but different irises. The other is that it has the greatest privacy implications, given the amount of information a sample of DNA can reveal about each of us. Nonetheless, given the popular belief in DNA as the ultimate identifier of who we are, there is little doubt that its role as a security tool is likely to expand.

^[19]Roger Jansson, Ph.D., et al., "Genetic Testing in the Workplace: Implications for Public Policy," Institute for Public Health Genetics, University of Washington (September 30, 2000).

^[20]Human Genome Project Information, "What's New," available online at www.ornl.gov/hgmis/project/about.html. The Human Genome Project has an extremely thorough and well-organized website.

^[21]Human Genome Project Information, "Gene Testing," available online at www.ornl.gov/hgmis/medicine/genetest.html.

^[22]Gina Kolata, "Two Genes Linked to Congestive Heart Failure," The New York Times (October 10, 2002).

^[23]Executive Order 13145.