Ten years ago, the U.S. Congress launched a $ 3 billion taxpayer-funded initiative to uncover the links between genes and disease. Labeled by proponents as biology’s moon shot and by detractors as science’s next Manhattan Project, the Human Genome Project promises to revolutionize testing and treatment for thousands of genetic diseases. It also promises to spawn scores of new business opportunities. The coming flood of genetic data also raises profound ethical questions for companies. In her new book, Future Perfect: Confronting Decisions about Genetics (Columbia University Press, 2001), Lori B. Andrews, a professor at the Chicago-Kent College of Law and director of the Institute for Science, Law, and Technology at the Illinois Institute of Technology, examines the legal and ethical issues surrounding genomics. HBR senior editor Bronwyn Fryer recently asked Andrews what executives need to know about the opportunities and risks. We often hear about the promise of genetic testing and treatment in the medical arena. Aside from medical applications, are there other business opportunities? Absolutely. The genetic gold rush is on, and it’s shaping everything from entertainment to law enforcement, from architecture to retailing. DNA is already becoming the new currency of identification. Consider genetic tagging, for example. At the Sydney Olympics, the tags on official caps, shirts, and other merchandise were printed with special ink that had been treated with one athlete’s DNA. When you scanned the label with a handheld device, you could tell whether the merchandise was the genuine article or a knock-off. Anything that requires positive identification—from driver’s licenses to works of art—can be tagged in this way. There will also be many opportunities for product breakthoughs. One inventor is working on a new kind of roof developed from biological materials; it sheds old shingles and grows new ones. And I think we’ll see a lot of new services that provide people with genetic information while protecting their privacy. You might go into a gene booth at a mall, give a blood sample—anonymously—and find out on the spot whether you carry the gene for, say, cystic fibrosis. This is information you may not necessarily want a doctor to know, but it may help you make a decision about whether or not to have a child. Why wouldn’t you want a doctor to know you’re carrying such a gene? Because you don’t control your own medical information. Doctors share it with insurance companies, and insurance companies can share it with employers. In an American Management Association study of large and midsize companies conducted last year, one-third admitted to collecting genetic information about their employees. Seven percent said they use this information in hiring and promotion decisions, despite the fact that discriminating against someone on the basis of a genetic disease violates the Americans with Disabilities Act and the employee’s privacy. But the ADA does not prohibit employers from “peeking” at their employees’ genes. One California employer, for example, surreptitiously tested its African-American employees for the sickle-cell anemia gene. Moreover, the laws that have been adopted in recent years to protect against genetic discrimination in insurance have huge loopholes. Thirty-three states prohibit denying people health insurance based on certain types of genetic information. But most of those laws do not protect people from discrimination based on genetic information about their relatives. So in 25 of the 33 states, insurers can easily circumvent the reach of the laws by basing their decisions on family histories. Moreover, state prohibitions on genetic discrimination don’t apply to self-funded insurance plans, yet 85 % of larger companies—those that have more than 5,000 employees—are self-insured. What steps should companies take to avoid accusations of discrimination? And what should companies developing new genetic technologies do to avoid ethical quagmires? Since privacy can’t be assured—and since genetic predictions are not fool-proof—most companies should avoid using genetic information when making decisions about employees. There’s no good reason for it, even when companies act out of the best intentions. An airline might argue, for instance, that to ensure flight safety, it wants pilots to undergo genetic testing for Huntington’s disease, a neurological disorder that causes involuntary movements. But such tests could ground pilots years before they show any symptoms. And the American Medical Association says it is not necessary to do predictive testing; the physical exams given to pilots will catch any neurological problems before they cause flying risks. Worse yet, a healthy pilot who finds out at 30 that he has the Huntington’s gene may face severe psychological trauma. Companies developing genetic applications should establish an ethics advisory panel with a human face. By this I mean gathering experts not only in law, biology, and philosophy but also in the human sciences—for instance, psychologists, sociologists, anthropologists. The reason for this is that there are cultural, religious, and social taboos against using human biological materials, as we’ve seen from the controversy surrounding the use of fetal tissue in developing treatments for Parkinson’s disease. Companies will need to disclose the use of such materials and meet the inevitable protests with some sensitivity. Witness what happened in the area of animal research. Initially, protesters were concerned about animal welfare. When companies ignored those concerns, a much more radical animal rights movement formed. Instead of avoiding difficult issues or brushing off objections, companies will have to meet them head-on.
