Issue Date: June 2, 2008
I HAD A BAD FEELING while riding the train to Boston on a recent Sunday afternoon. It was not a feeling of apprehension about the annual Bio-IT World Conference & Expo I'd attend that week. I felt creeped-out by what I had done the previous Friday afternoon.
After more than a year of stonewalling, I'd finally gone along on a family field trip to see "Bodies," an exhibit of plasticized, peeled, and dissected human bodies at the South Street Seaport in New York City. The exhibit has been in New York for nearly three years, where it initially caused a stir over the fact that it includes plasticized, peeled, and dissected human bodies.
I was not really surprised when I arrived at "Bodies" to find no sign of public protest—to find that the wonders of science at the admission price of $20 had prevailed over the minority opinion that a peeled human body exhibit was anything other than cool.
Yet the fascination also seemed to have subsided. The empty admission-line barriers snaked like a small intestine between the exhibit hall and Abercrombie & Fitch. We walked right in the front door and had all the time we wanted for an unobstructed view of what, close up, looked an awful lot like week-old boiled chicken. I thought during the train ride to Boston about how little I'd connected with the explicit, indeed exhaustive, display of what I'm made of. It said nothing to me about my life.
Three days later, I was seated in the auditorium of Boston's World Trade Center, where Linda Avey, cofounder of 23andMe, was giving her keynote address, describing a world in which the new pickup line at bars will be, "What's your haplotype?" Again, that creeped-out feeling.
Avey's company offers $1,000 genetic screenings that, in addition to giving the customer data presumed useful for preventive health care, will show what percentage of his or her ancestors came from Asia, Africa, and Europe. The novelty and sciencey coolness of knowing one's genetic makeup is very much a sales pitch at 23andMe.
And Avey was pitching to the faithful at Bio-IT World, where an elite group of scientists and technologists, feeling poised at the brink of a health care revolution, come to talk shop. Avey's presentation, however, was about exporting the revolution, giving the general public access to their genetic data at a relatively low cost. Another firm, Knome, based in Cambridge, Mass., will charge $350,000 for a scan that covers 98% of a person's DNA, as opposed to 23andMe's 0.02%.
It's time to move the science of genomics beyond academic elites and the walls of institutions, according to Avey. "We want people to be actively engaged," she says.
After her talk, Avey joined a panel that included Dietrich Stephan, cofounder of Navigenics, which plans to launch a similar service; and George Church, the founder of Knome, head of the Center for Computational Genetics at Harvard, and a board member at 23andMe. The group easily fielded questions regarding privacy and eugenics.
A more challenging question was posed by Robert C. Green, director of the Alzheimer's Disease Clinical & Research Program at Boston University School of Medicine. He asked whether people will understand a map of their genes and how getting a full genetic rundown will affect their behavior. Green also noted that complex diseases involve interactions of multiple genes that can't be easily charted. Opinions varied among panelists on the extent to which genetics predetermine a person's future.
Green told me after the event that he is "truly impressed" with Avey and others who are making the initial push to move genomics from laboratories into households. "I think they have extraordinarily high goals and standards," he said. "What people worry about is that the field will become the next nutraceuticals—a pseudoscience."
Avey, on the other hand, said she fears her work may become the next genetically modified organisms—a field pilloried by the press and activists to the extent that the public at large rejects it.
MY OWN FEAR is about distribution. If, in fact, the pioneers of genomic and personalized medicine are introducing the health care wave of the future, will that not selectively benefit a highly educated consumer able to afford the screening and deal with the data? The easy answer is that preventive medicine will reduce health care costs and that screening services, subsidized at first by those who can afford it, will become less expensive and more accessible. Church said his group has already brought the price of its service down nearly four orders of magnitude from an initial $3 billion per scan since 2000.
Green, however, said there may be something to my fear. "We don't have very well distributed health care now," he said, noting that rates of heart attack and cancer are much higher among the poor. "Forget about genetics. We don't have an even distribution of ordinary prenatal care."
Upon leaving the World Trade Center, my queasiness subsided somewhat. Avey's assertion that genetic information describes "the core of who we are" seemed a lot weaker on the street, away from the enthusiastic scientists she greeted from the stage as her "peeps." I thought about how uninterested I am in the haplotype of people that I meet and about how few people in New York City seemed interested in "Bodies" anymore.
Views expressed on this page are those of the author and not necessarily those of ACS.
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