Personal Genomics Will Arrive This Year, and With It a Revolutionary Wave Of Volunteerism and Self-Knowledge

Reposted from: http://edge.org/q2007/q07_7.html
my highlights in blue

GEORGE CHURCH
Professor of Genetics, Harvard Medical School; Director, Center for Computational Genetics

Personal Genomics Will Arrive This Year, and With It a Revolutionary Wave Of Volunteerism and Self-Knowledge

A small but crucial set of human pursuits have experienced smooth exponential growth for many decades—sometimes so smooth as to be hidden and then revealed with a jolt. These growth industries involve information—reading and writing complex artifacts made of electronic and/or DNA parts. The iconic example is the personal computer, which though traceable back to 1962, became manifest in 1993 when free web browsers spawned millions of personal and commercial web pages within one year. I’m optimistic that something similar is happening to personal genomics this year. We are in free-fall from a stratospheric $3 billion generic genome sequence (which only an expert could love) down to a sea level price for our personal genomic data. Early-adopters are posing and positing how to exploit it, while surrounded by envious and oblivious bystanders. We can now pinpoint the 1% of our genomes which in concert with our environment influences the traits that make us different from one another. Ways to tease out that key 1%, coalesce with "next-generation" DNA reading technology popping up this year, to suddenly bring the street-price down to $3000—about as easy (or hard) to justify as buying some bleeding-edge electronic gadget at an early stage when only minimal software is ready.

I am optimistic that while society is not now ready, it will be this year. The inevitable initial concerns about techno-downsides, e.g. the "Genetic Information Nondiscrimination Act of 2005", are already morphing into concerns about how to make these new gifts useful and reliable. Witness just this August, the US Senate began consideration of the "Genomics and Personalized Medicine Act of 2006". Momentum is thus building for millions of people to volunteer to have their genome data correlated with their physical-traits to benefit the billions who will hang back (due to inertia or uncertainty). These volunteers deserve up-to-the minute education in genetics, media, and privacy issues. They deserve protection, encouragement and maybe even rewards. Many current medical research studies do not encourage their human research subjects to fully fathom the potential identifiability of both their personal genome and physical traits data, nor to learn enough to access and appreciate their own data. The cost of educating the subjects is far less than the other costs of such studies and yields benefits far beyond the immediate need for fully informed consent. In contrast, other studies like the Personal Genome Project, emphasize pre-education sufficient to choose among (1) opting-out of the study completely, (2) de-linking genomic and physical traits, (3) restricting linked data to qualified researchers, (4) allow peer-to-peer sharing, or (5) a fully open public database. The subjects can redact specific items in their records at any point, realizing that items used to support conclusions in published work cannot be easily reversed. The excitement and dedication of these volunteers is already awesome.

I am optimistic that millions more will share. Millions already do share to benefit society (or whatever) in old and new social phenomena ranging from the Red Cross to Wikipedia, from MySpace/YouTube to SEC compensation disclosures. We wear ribbons and openly share personal experiences on topics that were once taboo, hidden from view, like depression, sexual orientation, and cancer. Rabbis' daily tasks now include genetic counseling. Our ability to track disease spread, not just HIV, bird flu, or bioterrorism, but even the common cold, will benefit from the new technologies and the new openness—leading to a bio-weather map. We will learn so much more about ourselves and how we interact with our environment and our fellow humans. We will be able to connect with other people who share our traits. I am optimistic that we will not be de-humanized (continuing the legacy of feudalism and industrial revolution), but we might be re-humanized, relieved of a few more ailments, to contemplate our place in the universe, and transcend out brutal past.