George Church: Optimistic about Personal Genomics in 2007

What are you optimistic about? This is the theme of the tenth Edge.org Annual Question, edited by John Brockman. George Church is optimistic about personal genomics. First, he is optmistic about the economics of personal genomics:

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.

While noting that not everyone is ready (or even aware) of this technological leap in-progress, he is optimistic that people are starting to catch-up.

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).

He is optmistic that health information altruism will come to pass in personal genomics:

I am optimistic that millions more will share [their genomic data]. 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…

And finally:

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.

Read the whole thing.

Several other contributors are optimistic about genes:

Freeman Dyson: "HAR1 ( Human Accelerated Region 1) As a New Tool Leading Us Toward a Deep Understanding of Human Nature"

JILL NEIMARK, The Human Epigenome Project

Samuel Barondes, Finding Mental Illness Genes

Edge.org 2007 Annual Question

Bush calls for genetic privacy

From the NYT:

“If a person is willing to share his or her genetic information, it is important
that that information not be exploited in improper ways,” Mr. Bush said at the
National
Institutes of Health
. “And Congress can pass good legislation to prevent
that from happening.” He added, “We want medical research to go forward without
an individual fearing personal discrimination.”

The recent issue of Duke’s GenomeLIFE magazine provides more background on the history and potential future of genetic non-discrimination legislation:

GINA is the Genetic Information Nondiscrimination Act, a bill that would ban
genetic discrimination for the purposes of employment or insurance.
Specifically, it would prevent health insurers and employers from using genetic
information to determine eligibility for insurance, set premiums, or hire and fire
employees.

But genetic nondiscrimination legislation has been introduced in every
Congressional session since 1995, each time without becoming law. So with the
newly sworn-in 110th U.S. Congress now in session, and with the Democrats
having reclaimed control of both the Senate and the House of Representatives,
at least for the moment, are GINA’s fortunes about to change? And if so, what
would it mean?

As the article points out, the roadblocks facing genetic non-discrimination have not come from the executive branch or the Senate for that matter, but from the House.  Susan Haga, from Duke points out:

Three committees in the House have to look at it and give it their okay—
that’s part of the challenge. And chambers of commerce and groups representing
human resources [HR] for large employers have in the past worried that the
bill will create a new source of litigation for them.

GINA was re-introduced into the House on January 17th, 2007.  You can follow the progress of the legislation at the Genetic Alliance policy page.

Sheryl G. Stolberg. "President Calls for Genetic Privacy Bill" NYT, Jan 18, 2007.

There Oughtta be a Law:The Fate and Meaning of Genetic Nondiscrimination Legislation. GenomeLIFE, Jan-Feb 2007.

Genetic Alliance policy page on GINA