A couple of years ago I flew to Oklahoma City to meet Ginger Weber. She suffers from an extremely rare genetic condition called Werner syndrome. In the landscape of American health, Ginger is one in a million. Although she and I were born within months of each other—two children of the 1940s baby boom—Ginger’s body has aged much faster than mine. Because of her disorder she is now, in effect, more than 20 years older than I am.
I became interested in Werner syndrome, and its gene, WRN, while researching medical genetics and the Human Genome Project. If DNA could be likened to a revealed scripture, the scientists of the genome project were its scribes, scratching out the sequence of the 3 billion chemical letters that define a human being (the mechanical version). In fact two projects, a public effort and a private venture, had competed to capture the sequence. The primary motivation was to speed the hunt for disease genes and for new drugs to counter them.
In 2000 the rival teams agreed to a tie and prepared to publish their readings of the human genome simultaneously. When the two publications appeared the following year, there was much cap flinging and commentary about the coming transformation of medicine. The competition had whetted everyone’s enthusiasm for the age of the gene, along with creating some anxiety about what the knowledge would mean for individual privacy.
So before driving to Ginger’s house, I stopped at the library of Oklahoma City Community College, which carried Science and Nature, the journals containing the results of the two projects. From one I borrowed a pullout illustration of the human genome. It mapped all the genes known to date. My idea was to show Ginger the location of the Werner syndrome gene, the source of all her pain. I was hoping that this would help break the ice between us.
The Werner gene hadn’t been identified through the Human Genome Project, but it had spun out of the same excitement about genomics and pharmaceutical development during the late 1990s. Indeed, Ginger’s gene had already been patented, traded, and cast aside. Long before I sought her out, I had learned that the great majority of the breakthroughs that are reported in biomedicine are not breakthroughs at all but dazzling dead ends. The light is always at the beginning of the tunnel, rarely at the end.
