Personalized Medicine—A Tall Mountain


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exploiting the growing power of genetic tests to sort cancer patients. Gilbert said it is presently difficult to find investment opportunities in this field, although Myriad Genetics, of which he is a co-founder, is branching out from its main genetic testing business into patient stratification. The company already trains many nurse oncologists in genetics.

Nobel prize winner Phillip Sharp of MIT, in the audience, called attention to newly announced plans by both Massachusetts General Hospital and the Memorial Sloan Kettering Cancer Center to genetically screen all their cancer patients. As data build up, analyses would gradually become more and more precise. The hope, Sharp said, was that insurers would cover an anticipated cost of $2,000 per patient.

The Food and Drug Administration, Gilbert said, “is extremely interested in stratifying patients.” FDA sees the possibility of certifying drugs for smaller cohorts of patients. But so far the drug companies, despite recent figures showing $40 billion in sales of biotechnology drugs, aren’t doing this. “They are not happy” with drugs with a non-blockbuster market.

Digitizing medical records is a vital part of the public participation Church seeks. That and education in genetics are “not a responsibility but a business opportunity.” So, “You must go around the hospitals and the doctors” to non-medical players like Google and Microsoft and crowd-sourced enterprises like Wikipedia. For Church, “integrated data” and stronger software are important for pulling together information on both rare and common diseases. He said, “People need to share both medical and genetic data.” Millions of people must be “coaxed to share the records they possess.”

Only this will open an escape from the current tyranny in genetic medicine of family history and a still weak “statistical” measurement of individual risk with DNA chips. So Church called for sequencing all the 1,400 rare human genetic diseases to create a single diagnostic test.

Both he and Gilbert saw big tasks calling for major investments, and they both appeared worried about who would come up with the money. How could people’s need for a genomic medicine turn into profit-making opportunities?

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Xconomist and science reporter Victor McElheny of MIT is author of Watson and DNA: Making a Scientific Revolution (2003) and Drawing the Map of Life: Inside the Human Genome Project (2010) Follow @

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