Breed Between the Lines

Rewriting the “Book of Life”

On June 26, 2000, President Bill Clinton announced the completion of the first draft of the “most important, most wondrous map ever produced by humankind.” Researchers had “mapped” the human genome; that is, they had determined the sequence of the roughly 3 billion base pairs of nucleotides that make up human DNA. “Today,” he added at the White House press conference, “we are learning the language in which God created life. With this profound new knowledge, humankind is on the verge of gaining immense new power to heal.”

On the platform with him was Francis Collins, head of the National Institutes of Health’s Human Genome Project. The 10-year-old government program, involving an international consortium of research facilities, most in the US, was supposed to take 15 years, from 1990 until 2005. Project researchers had been making their results available for anyone to use freely.

Also on the platform was J. Craig Venter, then president of Celera Genomics, Inc. In 1998 Venter had announced that Celera was working on a competing map of the human genome. The private company had promised to finish the job faster, using a new and controversial “shotgun” sequencing method, and sell the information to researchers. Venter (according to his critics) intended to plunder the human genome by turning humanity’s “book of life” into a for-profit library.

The result was a hotly contested race: public vs. private, establishment heavies vs. scientific maverick, genial scientist/bureaucrat vs. biological buccaneer. Neither group had actually finished sequencing the genome (the versions had major gaps and differed significantly) by the time of the press conference, but that minor point was largely lost in the hoopla. The White House manufactured a tie, with Collins and Venter crossing the finish line holding hands, so to speak, one hiding a grimace and the other a smirk.

Six years later, the revolutionary “immense new power to heal” is still on the distant horizon. Even so, the project has touched off a massive science education effort that is transforming how society views what it means to be human. Public and private institutions alike are producing what has become a flood of educational materials designed to attract students into careers in genetics and prepare society for the coming medical revolution. Many of these programs go beyond basic genetics. They presume that the interaction between genes and environment explains all biological development and thus all human activity, that free will is an illusion, and that people are just slightly more sophisticated than other organisms (just slightly, mind you, given that we have about the same number of genes as a roundworm). The idea is to help prepare society for what Venter described in a recent online essay as “a realistic biology of humankind.”

Reality never had a chance to live up to the hype. The New York Times called sequencing the genome “a pinnacle of self-knowledge,” and other publications gushed that we now know “what it means to be human.” “Revolutionize” became a favorite word among science journalists who quoted Collins (and others) predicting treatments for everything from cancer to schizophrenia, along with genetically designed drugs and amazing abilities to diagnose, anticipate, and even prevent disease.

There has been progress; since 2000, researchers have used the map to make significant discoveries, especially about the relationship between genes, environment, and disease, and have developed some diagnostic tools and a handful of treatments for some of the less genetically complicated illnesses. But it seems that the more scientists discover about the intricate inner workings of cells, the more complications they encounter.

That hasn’t discouraged many in the scientific community from taking advantage of the publicity generated by the sequencing of the map. In Cold Spring Harbor on Long Island’s north shore, in a stately converted red brick school just a quarter mile up the road from a waterfront park named after Billy Joel, is the Dolan DNA Learning Center. (Billy wrote no songs about genetics, unfortunately, but somebody did post online an ode to genetics and evolution called “We Didn’t Start the Theory” to be sung to the tune of Billy’s “We Didn’t Start the Fire,” presumably while wearing white lab coats and dancing around a Bunsen burner.)

The center is an offshoot of Cold Spring Harbor Laboratory, a prestigious, private, and non-profit research facility. The center provides genetics instruction for more middle- and high-school students than any other institution in the world—over 27,000 in 2004, according to its latest annual report. The day I was there, a class of middle schoolers wandered through a series of exhibits that included a ceiling-high replica of Watson and Crick’s 1953 model of the chemical structure of DNA, a sequencing machine, and a video on DNA replication. Students charted their own phenotypes (physical characteristics) and flipped up covers to read that, according to twin studies, genes account for 60–80 percent of intelligence, 30–40 percent of personality, and 40–50 percent of interest in religion.

There are also a handful of classrooms, including one laptop-equipped octagonal space where students do exercises in “bioinformatics,” which is computer-enabled data crunching. Because of the genome map and high-powered computers, high-school students can do research here, such as genetic database searches and population modeling, that 15 years ago was limited to PhDs in high-end research facilities. The center also offers summer camps and internship programs and sends out teachers to conduct seminars across the country.

One display confidently assures visitors that in the field of “pharmacogenomics” scientists are “designing medicines for the individual, based on their genome.” It doesn’t mention that, as Genetics for Dummies (2005) explains, “nobody knows how many genes are involved in drug reactions, and most of the genes that are involved haven’t even been discovered yet.” Similarly, the center states that researchers are working on gene therapies (using viruses or other agents to insert correct genes into cells with disease-causing genes) and so “attempting to treat the cause of the disease, rather than its symptoms.” Absent is any discussion of the conspicuous lack of promising results for gene therapy since Jesse Gelsinger, a college student, died in a 1999 clinical trial. Even the journal Genomics & Proteomics conceded in the headline to an article last fall that “few areas of genomic research have been filled with as much unfulfilled promise as gene delivery.”

There is also a theater where a very helpful center worker loaded up for me a video called DNA: The Secret of Life. The computer animations show the astonishingly complex process of DNA replication and compare DNA to software, blithely affirming that genetic science “confirm[s] the evolutionary truth first recognized by Charles Darwin”—that all life descended from one organism. With the completion of the Human Genome Project, “now, finally, we have the total picture.” At best, this is misleading; scientists do indeed have the “book of life,” but cell development is expressed in a language involving DNA, proteins, and cell structure that researchers are only beginning to interpret.

Online, the DNA Learning Center’s family of websites (Gene Almanac; Your Genes, Your Health; DNA from the Beginning; and others) attracted over 5.4 million visitors in 2004, and traffic was probably much higher in 2005 after the center made its sites more accessible to search engines. In fact, search “genetics” and “education” on Google and information will practically pour out of your screen; I got over 38 million hits. Hundreds of private websites offer a vast array of information and resources. Many are openly commercial “e-health portals,” like mydna.com, offering everything from “Ask Dr. DNA” to medical news to lab referrals. Others, run by nonprofit organizations like universities and laboratories, offer curricula, classroom exercises, illustrations, videos, and so on.

Many of the top-ranked websites on the search engine are from government agencies, like Collins’s National Human Genome Research Institute (NHGRI), the Department of Energy, and the Centers for Disease Control. Many other federal and state agencies offer online genetics information. One hot topic every spring is the NHGRI-sponsored National DNA Day (April 25) commemorating the actual completion of the Human Genome Project in 2003. Last year thousands of students downloaded videos of science speakers, participated in online chats with geneticists, and worked through specially designed materials. (They also could have sent DNA Day-themed e-cards to suspected relations after purchasing paternity tests online, but that’s another story.)

Francis Collins, in a video message posted on the official website, says that “on DNA Day we all ought to reflect on the remarkable moment we have in history. . . . We’ve crossed the threshold. For all of human history we didn’t know our own instruction book. Now we know it.”

After opening with a few scenes of a cheerful but wizened little boy with a genetic disease that causes premature aging, Collins encourages his young listeners to consider careers in genetics. They could help people like Sam, and genetically based medical practices are soon going to be a major part of the mainstream, he says.

Toward the end, Collins concedes, gravely, that genetic science raises some serious ethical issues. For example, an individual’s genetic information could be used against him—health insurance companies might deny coverage to those whose genomes suggest that they are at increased risk of disease, or employers might deny jobs based on genetic information. But, he assures the students, the “best solution is a legislative one,” and Congress is working on laws against such things. And we all know how coldly logical and efficient Congress is, unsullied by politics and lobby groups and campaign contributions. So no problem there.

As for the possibility of designer babies, Collins says that the usual image of parents choosing their babies’ physical and psychological traits is “not scientifically accurate” because environment plays such a large role in development; you can’t guarantee results. But if genome-based medicine can decrease or even eliminate a child’s chances of acquiring particular diseases, why won’t it be possible through genetic engineering to increase the chances of a child having better brain functions? Or more height? Or smoother skin?

Collins also allows that some worry that genetically inferior folks will suffer discrimination analogous to racism. But he argues that, because humans are all over 99 percent genetically alike, genetics “ought to be a great way to reduce prejudice.” He doesn’t seem to think that the genetic differences that do exist, no matter how minor, might simply provide a justification for discrimination, backed by all the authority of science.

Keep in mind now that this promotional approach, which offers a utopian view of the possibilities while glossing over the dangers, has come before genetic science is even close to settling what’s possible and what isn’t. Collins is co-author of a 2003 NHGRI paper, “A Vision for the Future of Genomics Research,” that sets this out: “We have entered a unique ‘educable era’ regarding genomics; health professionals and the public are increasingly interested in learning about genomics, but its widespread application to health is still several years away. For genomics-based health care to be maximally effective once it is widely feasible . . . we must take advantage now of this unique opportunity to increase understanding.”

Perhaps even more troubling is the tendency, if you buy the hype presented in many of the genomics educational materials, toward a sort of determinism—genes plus environment defines “what it means to be human.” Some scientists are skeptical about this, but many of the leading lights and loudest voices take it for granted. In January, in a webzine called The Edge, Venter proposed that we are on the threshold of a “realistic biology of humankind,” the result of genomic science that can “sort out the reality about nature or nurture”: “It will inevitably be revealed that there are strong genetic components associated with most aspects of what we attribute to human existence, including personality subtypes, language capabilities, mechanical abilities, intelligence, sexual activities and preferences, intuitive thinking, quality of memory, will power, temperament, athletic abilities, etc.”

The implications of genetic/environmental determinism are startling. “What some individuals consider a sacrosanct ability to perceive moral truths may instead be a hodgepodge of simpler psychological mechanisms,” speculates Cornell University psychologist David Pizarro in the same issue of The Edge, “some of which have evolved for other purposes.”

Free will and moral accountability will also be history. From Oxford biologist Richard Dawkins: “Retribution as a moral principle is incompatible with a scientific view of human behavior. As scientists, we believe that human brains, though they may not work in the same way as man-made computers, are as surely governed by the laws of physics. When a computer malfunctions, we do not punish it. We track down the problem and fix it, usually by replacing a damaged component, either in hardware or software.” Dawkins pointedly adds that an “especially warped and disgusting application of the flawed concept of retribution is Christian crucifixion as ‘atonement’ for ‘sin.’”

Venter worriedly asks, “when these new powerful computers and databases are used to help us analyze who we are as humans, will society at large, largely ignorant and afraid of science, be ready for the answers we are likely to get?” The danger, he adds, “rests with what we already know: that we are not all created equal.” And what if ignorant, superstitious “society at large” balks at the notion that a human is nothing more than a pack of neurons and that some packs are more equal than others? Will scientists like Venter and Dawkins have to take charge for everybody’s good?

Venter would probably say that such a suggestion is outrageous and unfounded, and perhaps it is unfair to Venter and Dawkins personally. But scientists have a long history of attempting to exercise control over the direction in which society is headed. Consider again the Cold Springs Harbor Laboratory. From 1910 through 1940, it housed the Eugenics Record Office (ERO) and was a central player in the American eugenics movement, a major social force early in the twentieth century whose supporters included such luminaries as the Rockefellers and Woodrow Wilson. Today, the laboratory houses the ERO archives, and the center’s website has a very informative and blunt feature on the history of American eugenics and the laboratory’s role in it. Oddly, though, while offering specific critiques of the weak science that supporters used to justify the sterilization and suppression of the “feebleminded” and “social degenerates” (i.e., the poor, immigrants, and racial minorities), the feature implies that eugenics is evil but never explains why.

That’s understandable . . . in a sense. If naturalism—a philosophy that the Dolan Center takes for granted throughout its exhibits—is true, if we are only collections of DNA arranged by natural forces and there really is no ultimate meaning to it all, then it becomes hard to explain why eugenics is so awful. What’s wrong with taking charge of our evolutionary destiny?

Indeed, eugenics is still widespread in an informal mode anyway, only now it’s called “pre-natal testing” and applied through abortion of unborn babies with Downs Syndrome and spina bifida. It seems likely that this practice will explode in popularity as genetic tests become available for more diseases. And it’s a pretty small step, as well-known utilitarian philosophers like Princeton’s Peter Singer have argued, from terminating lives inside the womb to terminating those who’ve recently left it. At the other end, given that growing cohort of graying Baby Boomers, the Medicare budget crunch will likely get here long before pharmacogenomically designed drugs, handing the pro-euthanasia forces that much more ammunition.

The similarities between yesterday’s eugenics movement and today’s promoters of genomics are startling: a desire that society, for its own good, adopt the best scientific principles available; a focus on public education; and a deep faith in government. When society finally agrees that the Venters and Dawkins of the world are right, then the criteria for judging human life will, of course, be much more scientifically sound than race and class, skin color and country of origin. No, you will be judged on your genome (which, at 3 billion base pairs, is 255 times smaller than that of a salamander), and therefore the judgment will be sophisticated, precise, and irrefutable.

It would be uncharitable to say that those trying to educate the public about genetics are being deliberately deceitful about either the potential or pitfalls of genomic science. The scientific achievements are truly impressive, and the new “golden age of medicine” might eventually arrive. And some scientists, like Collins through the NIH, are attempting to educate the public about the ethical issues through in-depth materials, advisory panels, and so on. We need citizens informed about genetics, he says in the video, and “we’re going to need all of you” to help make the decisions that ensure that science moves forward “in a way we all believe is benefiting people in the maximum possible way.”

And there are also a handful of think-tanks, like the Center for Bioethics and Human Dignity ( cbhd.org), battling in the public arena this tendency toward determinism. But there is little incentive among those who produce most of the genetics education materials to dwell on the hazards. Government institutions need public support to make certain that legislators continue funding their work; private institutions want to develop markets for their research and the products that result by encouraging public acceptance of genomic-based medicine. The Human Genome Project sparked a cultural shift, and those pushing genetic science are taking advantage of it. As CBHD bioethicist C. Ben Mitchell explains, “The genie can’t be put back in the bottle.” The technology is coming; and though it may not bring a new golden age of medicine, it’s certainly going to change how we view ourselves. The question is whether society buys the determinism that at present comes packaged with it. One way or another, we’re going to get a “realistic biology.” •

Eugenics: self-guided evolution

Eugenics is the philosophy, developed in the 19th century, that human heredity can be improved with outside intervention. “Improvement” in this case usually means “healthier” or “more intelligent” and is sought through such things as birth control, selective breeding, and genetic engineering. Historically, eugenics has been most often used to justify state-sponsored human rights violations and, in several cases, outright genocide.

Interestingly enough, the modern field of eugenics was formulated in 1865 by Sir Francis Galton, a cousin of Charles Darwin who drew upon the latter’s theory of evolution and its implication that only the fittest should survive. The idea was quite popular early on and even had the support of such prominent thinkers as Alexander Graham Bell and W.E.B. DuBois; however, once Ernst Rüdin got hold of the notion and began incorporating it into Nazi rhetoric, it started to fall out of favor. Today, most view eugenics, at least in theory, as ignorant and susceptible to abuse.

The primary problem with eugenics is that a value judgment must be made as to which human characteristics are in fact “defective.” And since there is no scientific consensus on what constitutes a “flaw,” whether genetic or otherwise, one must rely on whatever a particular culture values at any given moment. Moreover, eugenics denies that life in and of itself has worth and so inevitably leads to cultural nihilism (the belief that existence is pointless) and despair.

Despite the denigrated status of eugenics, however, examples of it persist. Indeed, some argue that we are even witnessing a sort of eugenics revival, thanks to recent scientific advances. The transhumanist movement, for instance, with its attempts to increase longevity and human performance by combining people with machines, is in part based on the philosophy, as is genetic engineering. And the increasingly routine procedure of amniocentesis, the testing of the amniotic fluid surrounding a fetus for genetic abnormalities (the idea being that a mother should have all the facts in front of her before choosing to actually have the baby), represents perhaps the most egregious eugenics practice in decades.

Not exactly thrilled about genetic enhancement? You might want to get involved with your local bioethics agency. Here are a few places to start.

The Center for Bioethics and Human Dignity
http://www.cbhd.org
Specifically interested in bringing traditional values to a discussion of managed care, end-of-life treatment, genetic intervention, euthanasia and suicide, and reproductive technologies.

The Center for Bioethics and Culture
http://www.thecbc.org
Offers seminars, conferences, and other resources to help people think through bioethical issues.

Center for Human Life and Bioethics
http://www.frc.org/get.cfm?c=CENTER_LIFE
This arm of the Family Research Council is especially interested in influencing public-policy aspects of the bioethical debate.

The President’s Council on Bioethics
http://www.bioethics.gov
Advises the President on ethical issues related to advances in biomedical science and technology.

The American Journal of Bioethics
http://www.bioethics.net
Features regular updates on what is happening in bioethics.

The American Society of Bioethics and Humanities
http://www.asbh.org
The professional association for scholars and researchers in the field of bioethics.

The Hastings Center
http://www.thehastingscenter.org
Staff members are consultants, writers, and speakers in the field of bioethics. Offers a library and fellows program for researchers.

Center for Christian Bioethics at Loma Linda University
http://www.llu.edu/llu/bioethics
For the Seventh-Day-Adventist perspective on bioethics.

Kennedy Institute of Ethics at Georgetown University
http://www.georgetown.edu/research/nrcbl
A virtual clearinghouse for bioethical research resources.

From Salvo 1 (Autumn 2006)

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