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Getting the Whole Story

From the editor-in-chief
September 1, 2005

One of the greatest satisfactions for a technology journalist is getting the chance to see how a story actually plays out. Watching how a new technology evolves after the exciting early days when its potential seems unlimited often provides valuable insights into the innovation process. n So earlier this summer, TR associate editor Corie Lok got out her compass and atlas to track down the progress of one of biotech’s hottest stories of the late 1990s – how Iceland’s decode Genetics planned to mine the genomes and health records of that tiny nation. The company’s ambitious founders saw a unique opportunity to combine the explosion in genomic information with the detailed genealogic records that traced an isolated population across generations. The promise was breakthroughs in understanding the genetics of various diseases, better and safer drugs, and the start of a whole new era of personalized medicine, in which drugs are tailored to a patient’s genetic profile.

The beginnings of deCode, however, were mired in controversy, most of it centered on worries over privacy and a general unease about granting a single biotech company ownership over a population’s genetic legacy (see “Your Genetic Destiny for Sale,” TR April 2001). The good news, as Lok reports, starting on page 58, is that almost everyone she met in Iceland, from cab drivers to patients, now embraces the effort. What’s more, the experiment seems to be working: deCode reports its pipeline is bursting with potential drugs – including a promising one for treating heart disease – gleaned from its gene-hunting efforts.

Revisiting this story yields a few clear lessons. First, a country’s public attitude to technology does matter. Second, and just as important, given the right climate, public views can evolve. Efforts comparable to deCode’s in the United States and the United Kingdom met similar fears and were either quickly shut down or, as in the case of the U.K. Biobank, slow to get off the ground. (The U.K. Biobank now says it will get fully under way in September 2005.) To their credit, the people of Iceland dealt with the issues, compromised, and efficiently pushed ahead with what many now recognize as vitally important medical research. Perhaps it was a courage in the face of the unknown inherited from Viking ancestors.

It is hard to read Lok’s well-reported article and not think of the fate of another hot biotech story that also began to unfold in the late 1990s: stem cell research. Embryonic stem cells, which are able to form any type of body tissue, offer fresh hope for treating everything from Alzheimer’s to spinal-cord injuries, but the controversy surrounding them has seriously hampered research. Granted, the ethical issues that initially swirled around deCode and those still raging around stem cell research are vastly different, but one senses that opponents of both share much of the same vague and generalized distrust of the science. Only, unlike deCode’s gene hunting, stem cell research is a story that, to a large extent, has not been allowed to play out. In the United States, at least, politics have overwhelmed any fruitful ethical debates and any possible compromise.

But as the people of Iceland have taught us, there are often practical and sensible ways to move beyond such political blind alleys to mine the medical benefits of today’s most exciting biotech advances. David Rotman

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