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."
“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.
A few days later I got back on my bicycle and rode across the Charles River into Boston and on down to the headquarters of the Federation for Children With Special Needs. There I spoke with another old friend of mine, Rich Robison, the federation’s executive director. Nearly 20 years earlier Rich and I had met in a support group for fathers of children with disabilities. At that time Rich was the pastor of the First Baptist Church in the working-class neighborhood of South Gardner, Mass.
Rich left full-time ministry long ago and has been a full-time disability rights advocate for 15 years — a dozen or so within the Massachusetts Department of Mental Retardation, and the last few at the federation. Two of his (and wife Dottie’s) three children have Down Syndrome; one of their differently abled children is adopted. Down Syndrome is caused by extra genetic material on the 21st chromosome.
He had been considering leaving his ministerial post in Gardner for some while, he once confided to me. The turning point came when a member of a prayer group of which he was a member began to offer a prayer that his two children who had Down Syndrome be cured of their affliction. “Wait, wait,” the minister interrupted. “Do you know what Down Syndrome is? Do you know what chromosomes are? I’m not going to pray that my children be reinvented on the fly.” He later found out that this same person had surreptitiously anointed one of his children with oil, Old Testament-style. Soon thereafter, the Rev. Robison submitted his resignation. (He still is a part-time minister at a church in Boston’s Jamaica Plain neighborhood.)
The Federation for Children With Special Needs is an umbrella organization that brings together dozens of groups organized around the needs of children with specific concerns. One of its founders is a powerhouse named Betsy Anderson. Her relentless and at times ferocious advocacy — and her organizational skill — resulted in the passage of Massachusetts’ sweeping overhaul of special education law, known as Chapter 766, which mandated that students with special needs be given education to achieve “maximum feasible benefit” (MFB).
Massachusetts law, in turn, provided the model for the federal law which is, in its own way, the moral equivalent of Brown vs. Board of Education. Chapter 766 has been resisted since its passage, of course, and recently MFB has been scaled back to the lower federal standard of “free and appropriate public education.” But it has given an entire generation of parents across the country a fulcrum, at least, with which to budge the apelike ablist pecking order that had hitherto confined their children to imprisonment in basements and storage rooms instead of giving them an education.
The Federation for Children With Special Needs, and Betsy Anderson herself, had been instrumental not only in helping my wife and me learn how to promote our child’s interests, but also in our becoming militants. It wasn’t just that the federation (often Betsy herself) gave us advice over the phone; it wasn’t just that the federation’s handbooks gave step-by-step instruction in how to do judo with school systems and HMOs. Rather, Betsy and the federation were the proverbial revolutionary vanguard. They transformed our consciousness.
Before going to meet Rich at his federation office, I happened to read a paper by Eric Parens and Adrienne Arch that had been included in one of the heavy binders that Withers gave me at the Whitehead. It was called “The Disability Rights Critique of Prenatal Genetic Testing.”
This closely argued, heavily footnoted, 22-page article examines the proposition, asserted by a militant wing of the disability rights movement, that prenatal genetic testing should be abolished because it changes the status of people with disability, inherently establishing their own instantiation of humanity as pathological; because it reinforces stereotypes and bigotry, causing people with nonstandard DNA to be identified with their phenotype in a way that people with standard DNA are not; because it endangers disabled people by subjecting them to backlash at their ever having been born; because it perverts the nature of the parent-child relationship, causing children to be regarded as accessories to fit into their parents’ preferred lifestyle, rather than as autonomous persons to whom parents have a nonnegotiable and inviolable responsibility.
I asked Rich about the “backlash” argument against prenatal testing: that as more information became available about prenatal detection of abnormalities, there would be a backlash against parents who didn’t choose abortion. I knew, of course, that people resent paying taxes for special education. Had the nature of this resentment changed with advances in genetic research?
Rich laughed. “Without a doubt,” he said. “You wouldn’t believe how shameless people have become. They stand up in town meetings when people are voting on school budgets and point their fingers at the parents who betrayed their neighbors by not doing the right thing.” According to Robison, after years of hard-won progress in the battle for civil rights of people born with disabilities, the federation is now fighting hard just to preserve the status quo. The cost of educating a child with an “expensive” condition is increasingly seen not as a stroke of fate to be addressed by the community, like a house afire, but as an unfair burden imposed by profligate and sentimental parents on their tax-oppressed fellow citizens.
So I asked him if he had paid any attention to the Human Genome Project, and whether he saw a connection between it and a resurgent eugenics movement. “Oh sure,” he said, and we talked a while about that. His opinion was that genetics research in itself was not the point of his concern, but whether society should be normalized to accommodate individuals with different abilities, or whether individuals who did not conform to norms would be devalued. His concerns were pragmatic; for the philosophy he suggested that I chat with Betsy. We’ll come back to that.
Sometime last spring I drove up to Lowell, Mass., that old mill town, to talk with Jeff Bizzaro, the founder and executive director of Bioinformatics.Org. As of October 2003, Bioinformatics.Org has close to eight thousand members and hosts about 140 bioinformatics projects.
I don’t remember exactly when my trip to Lowell occurred in relation to my visits to the Whitehead and to the federation, but I remember getting lost on the way there because I was concentrating so hard listening to the live coverage of the war debate in Congress.
Lowell, Jack Kerouac’s stomping ground, is an odd city trapped in a time warp, full of old diners, brick buildings, and hundred-year-old bridges over waterfalls. As a consequence of getting lost, I had the opportunity to see up close several old neighborhoods by the river, and it seemed to me that Lowell is architecturally and emotionally dominated by the massive mills and factories above the Merrimack — even though nothing is made in them anymore. Nothing except designer molecules, that is. On the radio Congress voted to attack Iraq in order to neutralize the threat of its biological weapons.
Jeff Bizzaro met me at the entrance to the parking lot and walked with me to his laboratory. Jeff is a very soft-spoken guy, hesitant in speech, who dresses formally and acts formally, and espouses a philosophy that is fundamentally radical. Jeff is a proponent of open biology, a close cousin to open-source software. The driving imperative of the open-biology movement is to make freely available all techniques and results of genetic research. Bioinformatics.Org has servers that host research projects from around the world.
Although open biology is similar in spirit to the open-source software movement exemplified by Linux, it has a more urgent moral basis. After all, software is stuff that people write because they feel like writing it, but DNA defines the world we live in and who we are. Jeff Bizzaro founded Bioinformatics.Org as a bulwark against corporate appropriation of the very stuff of which we are made.
His laboratory was curiously derelict. There were some beakers and bottles and Bunsen burners, but there were also piles of dusty books and bench stations that looked as if they hadn’t been used in years. Nor was there much in the way of computers. I was surprised, especially since Jeff’s organization is in some ways at the precise zeta point of the zeitgeist, where anarcho-anticorporate egalitarian hackers battle the sinister Agent Smiths of the academic-pharma-government complex.
I had spent a lot of time in my wife’s various labs at Purdue and the medical schools of Tufts and East Carolina, and I had always been charmed by their incongruously low-tech feel. But that was decades ago, and I had expected to find something hypermodern here in Lowell. Instead I found something that looked like some combination of the ancient labs of my high school and an abandoned books-and-plumbing warehouse. The only thing that let me know I was in 2003 was the poster on the wall that showed the logical maps of 23 human chromosomes.
There weren’t any spare chairs in the lab, so we walked down to the departmental office and found a couch to sit on, and there we talked about the divide between private science and public science, and about the two-edged sword of openness. I asked Jeff how he had come to found his organization.
It came out of his experience at another graduate school before transferring to U-Mass Lowell. “It was largely out of disgust at personal politics in science… I had thought science was open,” he said. “I thought that sharing information was the whole idea of science. But there is enormous pressure against sharing. Departments have agendas, universities have agendas, and individual professors have agendas. I guess I had a naive notion of science as a utopian world.”
Scientists working for universities, he implied, were constrained by alliances between universities and corporations, and scientists working for corporations were simply lost to the commonweal. He decided to create a “back channel” where scientists could talk directly to each other without going through institutional filters.
Since we were within a zip code of my own bugaboo, I asked Jeff about the ethical choices each individual scientist implicitly faces. “When people consider ethics, they’re usually concerned with applications of genomic research: stem cells, cloning, health insurance, all that. But very few scientists have considered how the availability of information affects how science is done.” Citing Celera, he invited me to speculate on what the world would be like if all genetic research were done by corporations.
In his famous valedictory, Dwight Eisenhower gave two warnings. The first was, Beware the Military-Industrial Complex. Alas, we have not heeded this sage advice, but at least many people remember it. Eisenhower’s second, largely forgotten warning was to watch out for federal research money dominating the universities, because that would lead to the federal government’s takeover and corruption of science.
“The prospect of domination of the nation’s scholars by Federal employment, project allocations, and the power of money is ever present, and is gravely to be regarded.” Eisenhower said. “Yet, in holding scientific research and discovery in respect, as we should, we must also be alert to the equal and opposite danger that public policy could itself become the captive of a scientific-technological elite.”
It is this tendency that Bioinformatics.Org, in its own small volunteer way, resists. Genomic science is largely financed through tax dollars awarded to researchers at universities; these researchers and their institutions are increasingly bound to private money-making corporations that benefit only from proprietary advantage. This advantage, in an age when biology is becoming a subdiscipline of information science, often comes down to bioinformatics software.
At this point in the conversation we were joined by one of Jeff’s professors, who had a more benign view of things. “Corporate influence on academia is not all bad,” he said. In fact, there were many benefits to all parties, especially the public. The profit motive facilitated the transfer of technology from isolated laboratories out into the real world, where it could help people. And although the university had relationships with corporations, certainly he had never felt any pressure to keep his results secret. After chatting for 10 minutes, the professor moved on, and I asked Jeff how he felt about what the guy had said. “I have no reason to doubt him,” Jeff said, then added after a pause, “but he is the founder of a major bioinformatics software company.”
There are laws and processes designed to make sure that publicly funded research benefits the public, but gray areas and temptations abound. Bioinformatics.Org takes the direct route to protecting the public interest: It posts the sources.
But there’s a downside to that, I said. With all this information available to everybody, when all the techniques are public, and all the genomes are public, what’s to stop some Saddam, or some alienated script kiddie, for that matter, from whipping up a batch of Ebola or anthrax or some new custom bug that’s 10 times more sinister than either of them, and unleashing it just to see what happens? After all, scientists have already created a polio virus from scratch from off-the-shelf parts, using its published genome as a cookbook. How long before anthrax, Ebola, or worse are similarly constructed?
There was no way to prevent the evil use of this information, Jeff said. He was pretty pessimistic. As computer power increases, and as the Internet becomes ubiquitous, and as the NCBI publishes the genome for organism after organism, from the polio virus to human beings, “the trend is for individuals to have more and more power. There’s no telling how common lethal technologies will be in the future.” Wow, I thought, weapons of mass destruction as common as e-mail viruses.
Yet if the information were closed, we would be at the mercy of governments and corporations — and all meaningful freedom would end. But if information is open, then terrorists and malefactors can get to it just like anybody else. Bizzaro’s unhappy conclusion: “Eventually we’re going to have to choose between living in a total surveillance state, or in anarchy, where any suitcase might contain a bioweapon that can kill a million people.”
There was a third alternative, I said. It was the one being advocated by Bill Joy, the godfather of Berkeley Unix, Sun Microsystems, and the Java programming language, and the author of a much discussed article in Wired magazine, “Why the Future Doesn’t Need Us.” Namely, declare some areas of research off limits to humanity until we come up with a way to make sure we can handle whatever we discover. Coincidentally, this is the position that has been advocated since 1999 by Judith Knight, the founder of ARB, the Association for Responsible Biotechnology. Dr. Knight is a character in my novel.
“That’s never going to happen,” Jeff said, and he didn’t need to say any more.
Finally, I asked him about his own area of research. It turns out that he’s interested in the three-dimensional structure of DNA, and how it is mediated by proteins that manipulate proteins. He’s working with the DNA of the parasite Toxoplasmosis gondii — although he said, he knew little about the organism itself and nothing about the disease it caused. Eventually his research might lead to ways to combat the organism, but that wasn’t the object of his study. He just wanted to understand more about the function of UTRs, the untranslated regions of DNA.
I, on the other hand, would have been happier if he had been working on a drug to kill the goddamn thing — even if he were working with proprietary tools and information in the bowels of some multinational pharmaceutical corporation. For it was toxoplasmosis protozoans that ate good portions of my son’s brain, eyes, and nervous system when he was a fetus, and that remain lodged inside him 20 years later, waiting for a weakening of his immune system — like sleeper cells of little suicide bombers waiting for the signal.
Although it had been at least 15 years since the last time we had seen each other, Betsy Anderson greeted me like an old friend. She remembered my wife’s name, and our children’s names, and she knew that we now lived on Martha’s Vineyard. I was amazed, until I stopped to consider that my wife is a powerful person and that Betsy had good reason to remember her. Using Betsy as an inspiration and mentor, my wife, Betty Burton, worked with the Massachusetts Legislature to enact what we call “Jakob’s Law,” which requires hospitals to test umbilical cord blood for toxoplasmosis. Had that law been in place in 1983, our son’s infection wouldn’t have gone undiagnosed and untreated for the crucial first year of his life.
We walked down to the federation’s tiny library and got reacquainted, and then we got down to business. I wondered if she had had any misgivings about being, in a way, part of the Human Genome Project. “Part of me doesn’t want us to explore the universe, because we might not like what we find. Since we are going to explore, we need to mitigate the uses of that knowledge. But to find the right moral compass, the right limits, that’s a challenge,” she said. She went on to say that her main concern was that genomic discoveries be turned into therapeutic remedies. “People don’t understand that,” she said. “Just because we figure out what causes a disease doesn’t mean that there will be any effort to cure it.”
I asked her how she had gotten involved with ELSI. She had been invited, she said, by Jim Watson to be a member of ELSI’s Parent Advisory Board. I was surprised to learn that Dr. James Watson himself was the originator of the ELSI idea, and that it was at his insistence that legislation enabling the Human Genome Project explicitly called for the funding of research into the ethical, legal and social implications of this revolutionary advance in human knowledge.
I was surprised because I had heard rumors of Watson’s rather distasteful views on eugenics — that we should learn to breed prettier girls and smarter boys, or something like that. “Oh, Jim’s a wonderful man,” Betsy said. “A wonderful man.” And she went on to say that working on ELSI, which she did for the first few years of its existence, was a stimulating and satisfying experience, even if there were no clear answers to any of the ethical, legal or social issues that it raised.
That ELSI had come up with more questions than answers was hardly surprising news. I had read the President’s Council on Bioethics report, “Biotechnology: A House Divided,” which made policy recommendations on cloning, stem cell research and so forth. It was an enervating experience that left me unsettled and depressed. Because the experts, who all seemed to be good, sincere people who had done their homework and put earnest thought into their assigned tasks — who had debated, studied, reconsidered — came to the precise conclusion that they could agree on just about nothing except that there were some important issues here and that somebody ought to figure them out.
So when Betsy Anderson said that there was little consensus anywhere about solutions to moral quandaries I wasn’t surprised. But she didn’t seem as distressed by this as I was. She spoke knowledgeably and affably about dozens of people and organizations. I should speak with this person at the Genetic Alliance, she said, or that person at the New England Regional Genetics Group. She could introduce me to this author or that teacher. People with genetic conditions, parents of people with genetic conditions, concerned citizens, scientists, Betsy knew hundreds of them. They were all “good people,” Betsy said, and they held all kinds of irreconcilable views. “When you get into it,” she said, “it’s very complicated.”
That was a view seconded by Erik Parens, coauthor of “The Disability Rights Critique of Prenatal Genetic Testing.” Parens is a full-time bioethicist at the Hastings Center, which “addresses fundamental ethical issues in the areas of health, medicine, and the environment as they affect individuals, communities, and societies.” Shortly after my visit to the federation, I decided to give him a call.
At first, he seemed genuinely astonished that somebody from Salon was calling him. “Most things I write go out into the vortex,” he said. But he quickly recovered. “I shouldn’t say that,” he said, and told how he had just returned from an invited talk about the “Disability Rights” paper at the convention of the American College of Medical Genetics. “So people high up are aware of the critique,” he said. “Although it’s not possible to guess how many people take it seriously.”
I was intrigued by the idea of being a full-time bioethicist at a remote think tank in bucolic Hudson Valley, New York. What did he do all day? Surely nobody could just think about this stuff? It would make them nuts! It turns out that he also taught a course at Vassar College. “It’s fascinating that students who want to become doctors had never even considered that people who have disabilities might have a different view than those of able-bodied college students. Those of us in this field forget how ignorance of disabilities is so pervasive.”
Then we talked about the paper itself, and whether it addressed a mainstream or a fringe position. “There is great heterogeneity of views among people with disabilities, of course.” He told me about attending a convention of disability rights activists. “At our table we had some of the world’s most powerful critics of the technology as well as some of the most ardent defenders of procreative choice; people who despair of technology and people who are grateful to have access to new opportunities.”
Just as Betsy had said, when you get into it, it’s very complicated. So I asked Dr. Parens if there was any way to sort it out. Because I found it painful to think about this stuff, but unable to make myself stop. It was some kind of affliction.
“It’s so disturbing to see people opt for the easy extremes,” he answered. “On one extreme you have people who want to shut down everything in a kind of nihilistic despair, and on the other extreme you have people who don’t think any of these developments are worth worrying about. ‘Just get over it,’ you hear. ‘Get over your anxiety. The market will sort everything out.’ It’s tempting to chose one of these camps because there are no easy answers in between them, and people are impatient with hard questions.”
So I said, “Well I’m perplexed by all these issues. You study them professionally, at an institution devoted to nothing but studying them. Are you perplexed?”
“Absolutely!” he laughed. “As a liberal, I’m open to the argument that technology will relieve suffering. On the other hand there is the possibility that we are creating more suffering, if you take seriously the suffering of people due to arbitrary and unjust social norms.”
I said, “I get so frustrated because I feel compelled to figure out how I feel about genetic research, but I don’t make any progress. I don’t know how I feel about all this stuff.” Erik Parens, Ph.D. and professional bioethicist said, “The ones I don’t trust are the ones who know exactly how they feel about all this stuff.”
In San Diego last February, I asked Tim O’Reilly, the founder and president of O’Reilly and Associates, how it was that his company — long known as a publisher of books about software — was staking out a leadership position in this field. What was it about bioinformatics that made him want to get into it?
First, he said, bioinformatics was tremendously interesting and exciting in itself: “It’s giving us an understanding of how humans work. This will absolutely transform society.” It wasn’t only that diseases would be prevented and cured, Tim said, but also that healthcare, pharmacology, public policy, were all going to be revolutionized. In fact, the changes were bound to be so profound, over the next 20 years, that there was no way to predict them. So that made it an exciting place to be.
Second, the computational demands and distributed databases required to store genomic and proteomic information about dozens, hundreds, thousands, millions of organisms, were “pushing the envelope of computer science.” When you’re examining databases that have billions of base pairs, finding the signal in the noise is a challenging problem. People have been talking about the potential of Web services for some time, Tim said; the people at the Bioinformatics conference were pushing that concept further than anybody.
And third, the culture of science and the culture of open source were mutually reinforcing in a fascinating cultural dynamic. “Much of the hype of ‘open source’ has been focused on the wrong issues, about licensing and nomenclature. I’ve always felt that open source is more a matter of culture — of sharing, of participating, of developing practical interactions with customers, of architectures that let users make changes that will affect the whole system. The best practices of science and of open source are quite similar.”
The open-source, open-biology movement is a counterbalance to the corporate influence on universities, he said. This trend is made possible by the “social dynamics of the Internet. People put their ideas out into the liquid marketplace of ideas, and they route around the power structures … Lots of the best people in computer science have an adventurer-hacker ethic — they want to do interesting work. ‘Where can we go to do cool stuff and have an impact?’”
But what about the downside, I asked. What will happen when the script kiddies start making polio instead of e-mail viruses? “If you want to be a pessimist, there’s room for pessimism,” Tim said. But the clock was not going to be turned back in any event. So we should take courage that there have been no signs of “black hats” in the bio world. In other words, the kind of asshole jerks who make e-mail viruses hadn’t yet demonstrated the skill, or the motivation, or the whatever, to actually go to all the trouble of making a carbon-based pathogen.
“Script kiddies have been second tier,” Tim said. Elsewhere, of course, as we were talking, armies were massing for an attack on Iraq precisely to put down what was claimed to be a large government-sanctioned script-kiddie operation.
But O’Reilly refused to buy into my own techno-skepticism. He said that we needed to avoid “absurd techno-boosterism.” But on the other hand, “we have an opportunity, as a species. We have such an opportunity.”
“I think of bioinformatics as a symbol of all that’s potentially interesting about the future. Everything on the frontier will require new software, new concepts. How will we manage to shape processes beyond the conceptual scale of humans? … I admit that we’re pretty out of whack. The profit motive leads us to make suboptimal decisions. We need to learn to define ‘self-interest’ in longer terms. But the potential for good things to happen is limitless.”
My wife Betty and I have many friends who have nonstandard DNA — they’re what others might call crippled, or retarded, or nuts; sometimes all three. In the crowd in which my wife and I travel, genetic research is regarded with a wary eye, because “genetics” is damn close to “eugenics,” and “eugenics” is a kissing cousin to Dr. Mengele, some of whose fiendish experiments were performed on the kind of people whose DNA gives expectant parents-to-be nightmares, people like our friends.
“When I was doing that work on bacteriophage DNA, I was motivated by the beauty of the mechanism,” Betty said one day. She was wearing a faded Biodevastation T-shirt. “I never dreamed of doing work on human DNA — or even on eukaryotic cells. I had no desire to go play God with human DNA, and I think the Human Genome Project is really scary. It’s scary because we haven’t figured out what all the implications are, and we’re doing it just because we can do it. When the scientists built the atom bomb, perhaps they had no time to think about what they were unleashing. But we do have time to think. What’s the rush? I think it’s silly, and I want no part of it.”
I should perhaps make abundantly clear that our children’s conditions were not caused by Betty’s laboratory work. Our son’s disease was caused by the toxoplasmosis parasite, which is transmitted in cat feces. Betty never worked in a laboratory where toxoplasmosis was studied, and she is allergic to cats. Our hypothesis is that she contracted the disease from gardening, although she may have gotten it from undercooked meat, where the parasite can also be found. Jane’s bipolar disorder, so far as anybody knows, is not strictly speaking a mutation; it is an inherited trait. The genetics of bipolar, however, are not very well understood. There are hints but no clear-cut answers.)
After digesting Betty’s rant, I mention that Jeff Bizzaro is doing work on toxoplasmosis DNA. Maybe work like his will lead to treatments that would save children from suffering such as our son has endured. Maybe his research could lead to medicines to kill the organisms still inside him.
“Well, yes, there’s that too,” she said.
“Some interesting stuff on bipolar recently,” I said.
“One cheer for the new eugenics.”
For you see, Jakob’s case is the easy one for us. We understand how we feel about toxoplasmosis, an invading organism that attacked our precious boy while he was still in the womb. We don’t hate the organism for the “end result,” of course: Our son is just fine the way he is, thank you very much. The fact that Jakob does not see very well and has poor coordination is about as significant to our relationship as the fact that I can’t dunk a basketball or win a chess match against any reasonably proficient player. We hate toxoplasmosis and want it abolished from the earth only because of the pain and trauma it has caused our son, not because it has diminished him.
But how are we to feel about Jane’s bipolar disorder? That’s built into who she is, just as Down Syndrome is built into Pastor Robison’s children. We’re not going to pray that our daughter be reinvented on the fly. That is a disgusting thought. I would love to see her suffer less, however.
A world without people like Helen Keller, or like Jane and Jakob, would be an impoverished world indeed. May I never live to see it. But what kind of world can I expect to see? Whither are we tending? I have my own reading of the tea leaves, my own decoding of the genome, and I don’t like what I see.
Let’s stipulate that as an inevitable consequence of the deoxyribonucleic decryption by that dihelical duo Watson and Crick, humanity’s eclipse has begun in earnest –incidentally catching our medieval theologies (and even Bill Bennett?) — a tad off guard. In other words, because the DNA cat is out of the bag, we humans are doomed to be superseded by whatever we engender. For whatever reason, this is a prospect unsettling to many of us, and That Old Time Religion offers scant consolation to anybody who might care about the demise of Homo sapiens and who also has at least half a brain.
Let’s further stipulate that, just as once-criminal pornography — now disguised as consumer advertising — is force-fed to children in public schools under corporate mandate, Hitlerian notions of what is and isn’t human are, in 2003, fundamental, commonplace American consumerist dogma. In our culture, now more than ever, the beautiful are gods. And the disfigured, paralyzed, blind, deaf and mentally ill are at best an unavoidable nuisance, at worst an intolerable, “politically correct” burden on the rest of us decent folk. If you don’t believe me, ask Rush Limbaugh. Or MTV.
Let’s stipulate that here in Karl Rove’s America, our moral universe is predicated on our economy, that our economy is predicated on consumerism, that consumerism is predicated on narcissism, and that the narcissist, the driver of our economy, is driven by the search for his or her own physical perfection and the derivative perfection of his or her own children, pets and other possessions.
Obviously this perfection obsession at the root of our culture is thoroughly enmeshed with sex, the DNA-driven urge each of us feels to find the perfect vector to propagate our own deoxyribonucleic heritage. We are biologically programmed to procreate, and, at that, to procreate with the best available evolutionary stock. In a capitalist system, that optimal evolutionary stock follows the money. In our world good looks and physical exceptionalism are supremely marketable commodities, as Michael Jordan can explain much better than I. Therefore America (along with its copycats) stands for nothing if not the moral imperative of its wealthiest, best-looking people to do a lot of fucking. I’m sure we can all agree on that.
As consumerism is our official state religion, and insofar as mucking about with DNA is clearly a religious or quasi-religious activity, it follows that the purpose of the billions of public dollars invested by the state in the Human Genome Project is to make perfect people. Or to be precise, the Human Genome Project furthers our demonstrated national values to the extent that it facilitates the creation of physically perfect people who buy lots of stuff.
That’s why I predict that for all its incredible potential to cure ailments and alleviate suffering, the ultimate consequence of the Human Genome Project will be to promote the creation of people like the boy-band singer-dancer Justin Timberlake, who — as I saw on an episode of the TV show “Punked” — is stupid, shallow, humorless, inarticulate, good-looking, athletic, and really, really rich. He is the ideal American.
That’s why a stated goal of our nationally funded research is to create devices that can sequence an individual genotype for under a thousand dollars. Such devices will help prospective parents with their all-important abortion decisions, just as the Internet helps them decide what car to buy or what restaurants to try. And of course they will help Mr. Ashcroft to keep tabs on all of us potential terrorists, and they will help the corporations help us decide what to do, purchase and think. I don’t expect, however, that these machines will do much to find a way to kill toxoplasmosis spores hiding deep behind Jakob’s blood-brain barrier. But maybe I’m just cynical.
As Betsy Anderson said, just because we’ve identified the genetic cause of a condition, that doesn’t mean that we’ll develop any therapeutic remedy for it. The more likely result, my nickel bet, is that we’ll “deselect” the problematic genotypes and let the market make our choices for us, until Michael Jordans and Justin Timberlakes and their female counterparts are as common as the proverbial John and Jane Doe, God have mercy on us, and the mutants and substandards will be despised, persecuted and banished. Just because this is the stuff of dystopian science fiction doesn’t mean it won’t happen.
Oh, I’m wringing my hands raw, I am.
I wrote and published my novel “Acts of the Apostles” as a way to drive these preoccupations from my head. The inoculation worked for a while, but obviously it wasn’t a cure. The book is a paranoid satirical techno-thriller about a really clever Iraqi biological weapons program, and about nanomachines that arrange human DNA. I like to think of it as “Michael Crichton meets Flannery O’Connor,” but maybe it’s more like “Tom Clancy meets Mad magazine.” I’m not a very good judge of such things.
Sometimes, when the weather is nice, I carry a hand-lettered sign, a box of books and a pile of reviews to a little park across the street from the Whitehead Institute (and just down the block from MIT’s nanotech lab), where there’s a caravan of catering trucks purveying Mexican, Italian, Lebanese and Thai fast food. “Come check out my novel,” I say to the people waiting on line. “Nanomachines. Neurobiology. Techno-paranoia. Ten bucks. Cheap.”
“You got reviewed in Salon? I thought you were some kind of crackpot.”
“Yes, I know,” I say. “I am.”
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