Gen-Etiquette
Scientists may be mapping the genome, but it will be up to us to determine where the map will lead
Lori B. Andrews | posted 10/01/2001 12:00AM
In 1998 a new boutique, Gene Genies Worldwide, opened in a trendy shopping area in Pasadena, California. Its advertising offered "the key to the biotech revolution's ultimate consumer playground." The store claimed to sell new genetic traits to people who wanted to modify their personalities and other characteristics. The boutique was filled with the vestiges of biotechnology—petri dishes and a ten-foot model of the ladder-like structure of DNA. Brochures highlighted traits that studies purportedly had shown to be genetic: creativity, conformity, extroversion, introversion, novelty-seeking, addiction, criminality, and dozens more.
A few passersby denounced the owners as Nazis. But most people entered the store ready to plunk down their credit cards to change the genetic inheritance of their families. Shoppers initially requested one trait they wanted changed, but once they got into it, their shopping lists grew. Since Gene Genies offered people not only human genes, but ones from animals and plants, one man surprised everyone by asking for the survivability of a cockroach.
The shop's owners, T. Kim-Trang Tran and Karl S. Mihail, were thrilled at the success of their endeavor, particularly since none of the services they were advertising were yet available. Despite their lab coats, they were not scientists, but artists striving to serve as our moral conscience. "We're generating the future now in our art and giving people the chance to make decisions before the services actually become available," said one of them. (Their exhibit now exists in virtual reality at www.genegenies.com.)
Now that scientists have drafted a sequence of about 3 billion base pairs that make up our genetic constitution, we all face a momentous task: Trying to imagine that future and determine when, how, and by whom this new genetic knowledge should be used. It's a rocky road ahead, for in the very process of attempting to understand what makes us human, we might lose our humanity.
The dizzying assortment of available genetic services raises challenges for us as individuals and as members of a larger community. In the next few years, each of us will face the question of whether we should undergo genetic testing. In some instances, as hundreds of people have already found, we may be tested without our knowledge or consent. For the good of their business, insurers, employers, or courts have already begun making decisions about us based on our genes.
At one level, genetic technologies raise questions similar to those of other medical technologies—about quality, access, individual rights. But there seems to be something profoundly different as we stand at a junction where all of biology looks like a set of building blocks that can be manipulated by entrepreneurial will.
People are starting to use information about genetic risks and the availability of genetic diagnostic and treatment services to make major life decisions: where to live, what type of job to take, what type of insurance to purchase, even whether to bear a child. Scientists and doctors already have begun recommending parents whose children have a genetic propensity toward skin cancer to quit their jobs and move to a rainy city like Seattle.