How I decoded the human genome

We are becoming the masters of our own DNA. But does that give us the right to decide that my children should never have been born?

By John Sundman

Oct 21, 2003 | Peter Cooper stood at the front of the San Diego Westin Hotel's Plaza Room and methodically worked his way through the 132 slides of his presentation, "Integrated Access to Complex Genomes at the National Center for Biotechnology Information (NCBI)."

Cooper -- a slender man, perhaps 40 years old, with a trimmed beard -- spoke with an easy academic confidence to a hybrid audience of computer geeks and molecular biologists at the second annual O'Reilly & Associates Bioinformatics Technology Conference. The slide on the screen behind him said something about the Whole Genome Shotgun in Genbank and about Sequence Tagged Sites that pinpoint the segment of gene, EST, mRNA or genomic DNA of a known microsatellite position. I sat in the back row, near an exit, and tried not to have a panic attack. My career as a moral philosopher was only 6 hours old but already I could smell it going up in smoke.

I had come to San Diego looking for a deep understanding of the meaning of life, which I was planning to bottle and sell at a decent markup. I wanted to address the questions that have been implicit ever since Rosalind Franklin's crystallography revealed God's schematics for James Watson and Francis Crick to decode: What is a human being? What is our worth? Who decides?

But all I was getting was science, and that was bad. Now, science is OK, of course, for people who like that kind of thing. But I had come to the O'Reilly conference on a self-financed gambit to elbow my way into the moral-philosophy racket. I figured that if Bill Bennett and similar gasbags could make millions spouting mere platitudes and recycled 15th century theology, then I should be able to make a few large, at any rate, for genuine insight into ethical quandaries occasioned by 21st century breakthroughs in biological science.

Especially in 2003, the golden jubilee of Watson and Crick's seminal eureka. It was the proverbial Klondike opportunity, but in order to cash in I would need to come up with some salable wisdom that was predicated on an actual understanding of current DNA technology. So that's why I was sitting in Dr. Cooper's lecture and waiting for profound insight.

Maybe I should mention that I was also pretty broke at the time. I might also mention that two of my three children have different rare, chronic, severe, incurable congenital life-threatening diseases, and that my third child has Lyme disease. So: three children; three rare, horrible diseases -- I know what it is like to pray for medical breakthroughs. And I've been marginally active in the disability rights movement for 20 years.

As Cooper droned on about curated transcripts and proteins of human, mouse, fruit fly, zebrafish and arabidospis --whatever that is -- I was imagining myself once again a graveyard-shift pallet jockey in Island Food Products' refrigerated warehouse. There I was, on assignment from Salon, participating in a scientific conference at the virtual epicenter of the biodigital convergence -- where DNA and digital computational paradigms were ineluctably fusing before my very eyes -- and all I could think about was how goddamn, goddamn heavy liquid ice cream mix is at 3 in the morning, and how little one gets paid for moving it. Pallet-jockeying is honorable labor, mind you, but I'm 50 years old and I'm kinda sick of working with my back.

And this was the year! That's why Dr. Watson's book, with the World's Most Obvious Title, despite being a little large for the beach bag, was required summer reading for anybody at all hip to the Next Big Thing in evolution. My first step on the road to moral philosophy was clear: write a story exploring the inherent tension between the drive to eliminate unwanted genetic conditions and the imperative of living human persons who have those conditions to claim and maintain their full, perfect, humanity.

My editor was supportive. "But remember," he said. "The last thing the world needs is another article full of hand-wringing about DNA. I want facts, not whining." "Gotcha," I replied. "Facts!"

Those words came back to me as I sat listening to Dr. Cooper explain that the ATP binding cassette transporter superfamily contains membrane proteins that translocate a wide variety of substrates across extra-and intracellular membranes, including metabolic products, lipids and sterols, and drugs. Facts, not whining.

There were facts aplenty at the O'Reilly Bioinformatics Conference. Hundreds of millions of facts, as it turns out: every damn C or A or T or G for every damn critter under the sun was there; I felt like I was drowning in facts. And there were facts at the Whitehead Institute for Biomedical Research -- that part of the distributed Mecca of the Human Genome Project that's located in Cambridge, Mass. -- where I went next. And at the Hastings Center, the bioethical think tank in Garrison, N.Y.

And there were facts in Lowell, Mass., where I spoke with the prime mover of the open bioinformatics movement. And there were facts at the Federation for Children with Special Needs, whose founder, an old friend of mine named Betsy Anderson, was a charter member of the Ethical, Legal, Social Implications team of the Human Genome Project. And at the Perkins School for the Blind, where multiply handicapped kids find asylum from a world obsessed with perfection.

Facts were everywhere. But where was the genuine insight into ethical quandaries?

Next Page: Me vs. DNA: This time it's personal!

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