Friday, Sep 5, 2008
Yes, genetics research can alleviate suffering. But in our consumerist, narcissistic society, it's ultimately about producing perfect people. Part 2 of "How I Decoded the Human Genome."
Oct 22, 2003 | "The Human Genome Project represents one of the remarkable achievements in the history of science. Its culmination this month signals the beginning of a new era in biomedical research," said Eric Lander, Ph.D., director of the Whitehead-MIT Center for Genome Research in a press release last April. "Biology is being transformed into an information science..."
A few weeks after my trip out to San Diego for the O'Reilly Bioinformatics Technology Conference, spring came to Cambridge, Mass. I was still mostly unemployed but had picked up a small part-time consulting gig with the Association for Computing Machinery -- which was ironic inasmuch as an article of mine had been published in Salon in the interim, in which I had given ACM a raspberry. But I had avoided going back to working at the food warehouse, which was the main point. And I still had time on my hands, and vague hopes of cashing in on the moral-punditry idea.
So after making arrangements I hopped on my bicycle and rode 3 miles down to the Whitehead Institute, a building upon which I used to gaze during boring meetings in happier days when I'd had a job in an office building just a little ways down the road. It had been a very cold winter, and all of a sudden it was surprisingly hot, even though the trees had not yet opened their leaves.
I don't suppose I made a very good journalistic impression. I was perspiring from the ride and had forgotten to bring the pad on which I had written my questions. What I wanted to know was, since human genetic research was fraught with ethical issues, and since the institute was one of the world's premier genetic-research entities (if not the premier entity), how did the institute help its own scientists make ethical decisions about their work? Mainly, I think I gave the impression of being a kook.
I spent an hour chatting with a very sharp and assertive public relations person named Melissa Withers, who seemed put off by my line of inquiry but nevertheless answered my questions directly and provided lots of useful information. If I wanted to know about the ethical, legal and social implications of the Human Genome Project, she said, I should get acquainted with the work of ELSI, the Ethical, Legal and Social Implications subcommittee of the Human Genome Project itself. She was gracious to not point out that I wasn't the first person to ask such questions.
The Whitehead, she told me, does not advocate any policy positions. Rather it takes a leadership role in informing public debate. She told me about various symposia that the institute had organized to discuss the very issues that concerned me, and then excused herself for a minute and returned with a 4-inch-thick binder labeled "Whitehead Policy Symposium on Genes and Society: Impact of New Technology on Law, Medicine, and Policy."
"There is no shortage of information-reliable, unbiased, well-written information about what our scientists are doing," she told me. And she was correct about that. The Whitehead is indeed a paragon of self-explication. Therefore, she implied, there was no justification for dark fears about what went on in its laboratories. I wasn't ready to buy that.
I mentioned Biodevastation and the concern that many people had about the whole prospect of genetic engineering, even genetic research. I said some people believed that this stuff, like Pandora's box, was best left alone. That was a point of view for which she had no sympathy, and I could see her moving away from me on the Group W bench, so to speak.
Ms. Withers went on to say that the Whitehead had concluded that its symposia were too geared to the eggheads who were already in the know (my words, not hers). In the real world there were judges who had to make important decisions, she said; high school students who were trying to sort this all out. It was more important to help them understand the underlying science than it was to promote endless debate among specialists. Therefore the Whitehead had discontinued its symposia and was moving toward more and smaller outreach programs to meet the needs of ordinary concerned citizens.
The Whitehead Institute has a historic commitment to policy discussions, but the institute itself has no direct input into policy, she explained. Individual scientists affiliated with the institute, of course, may indeed take part in policy discussions, and several of the institute's most prominent scientists have testified before Congress on issues of privacy, stem cell research, cloning and so forth. But the institute itself was neutral.
I was very impressed by the Whitehead's outreach philosophy. But what I wanted to know was, since Whitehead scientists were actually letting the cats out of the bag, opening up the door to an unknowable and perhaps scary future, what, if anything, did the institute do to develop the decision-making ability of its own scientists? What, for example, was the impact of the Whitehead symposia on the day-to-day life of the research scientists?
Withers seemed taken aback by my question, as if I had asked her why water was wet. "Nothing," she said. "We do basic research."
At that moment I had the most odd experience of déjà vu, for I had heard this whole conversation before. It appears in my novel "Acts of the Apostles," where a scientist named Judith Knight, founder of the Association for Responsible Biotechnology, attempts to persuade another scientist, named Dieter Steffen, to cease his research into nanomachines that can rearrange arbitrary DNA sequences. She has reason to believe that this research has been appropriated by the Iraqi biological weapons program (I wrote this in 1995).
At the end of our talk, Withers escorted me to the institute's library and told me that I was free to use it whenever I wanted. It was humbling, because the library was so wonderful -- and also air-conditioned on an unseasonably hot day -- so well appointed, so full of the best work of the brightest humans on the planet -- many of whom were working, at that moment, within 50 yards of where I stood. I felt like I was in an episode of "Star Trek," when Kirk finds himself in a superior civilization where everybody is twice as smart as he is.
In the elevator on the ride down I noticed posters for an upcoming talk at the Whitehead. It mentioned some kind of procedure, or assay, and the words "Russian Roulette." I rode my bike home loaded down with 20 pounds of proceedings from various symposia that the Whitehead has organized on the social, legal and ethical implications of genetic research. Because I'm such a time-delayed idiot it took me until I was pedaling up Winter Hill half an hour later to realize that I should have ripped off that Russian Roulette poster in the elevator and kept it for a souvenir.
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