Last week, Francis Collins, the director of the National Human Genome Research Institute, and Craig Venter, the CEO of Celera Genomics, joined President Clinton at a press conference to announce their completion of the first map of the human genome. “Today, June 26, in the year 2000, marks an historic point in the 100,000-year record of humanity,” declared Venter. “Our species can read the chemical letters of its genetic code.” Collins was equally effusive: “Today, we celebrate the revelation of the first draft of the human book of life. … We have caught the first glimpse of our own instruction book, previously known only to God.”
As the two scientists embarked on a media blitz, however, the questions turned tricky: Should Celera be allowed to patent genes? Could rich people engineer superior children? Could humans live forever? Would genome research debunk free will? Fearing a backlash, Collins and Venter toned down the rhetoric. Out went the promises of self-knowledge and divine revelation, replaced by pooh-poohing reassurances about the harmlessness of patents, the fallacy of genetic racism, the impossibility of “designer babies,” and the folly of determinism. But the reassurances are no sounder than the promises.
1. Privacy. Collins works for the government. Venter, however, works for private investors and corporate partners who expect to make money from genetic information. If the government outlaws the use of genetic information for particular purposes—namely, discrimination by employers and health insurers against people with genetic flaws—genetic information can still be sold, transferred, and used in profitable ways. But if the government mandates broad genetic privacy—restricting the sale, transfer, and use of a person’s genetic information without that person’s consent—making money from that information becomes far more difficult and burdensome.
So, while Collins doesn’t object to the media’s conflation of “genetic discrimination” with “genetic privacy,” Venter repeatedly separates the two ideas and dismisses the latter. “It’s more genetic discrimination than genetic privacy,” Venter argued on the Today show. On the CBS Early Show, he added, “Privacy is something everybody talks about, but we can’t keep medical records private.” On Meet the Press, when Rep. Henry Waxman, D-Calif., asserted, “People’s medical information shouldn’t be made available without their consent,” Venter replied, “You cannot protect the privacy of information. It’s widely distributed. The only chance we really have in this country for protection is protection against misuse of that information. So I think that’s where the focus has to be.”
2. Patents. Celera has patents on about two dozen genes. Other companies have many more. Most people find the idea of patenting genes creepy, and critics worry that such patents, filed by greedy “DNA landlords,” will limit research and public access to newly developed cures. Collins, who advocates a “partnership” between the government and the biotech industry, argues that patents give companies an “incentive” to do genetic research that may not pay off financially until years later. But Collins ducks philosophical challenges to this utilitarian calculus. On Face the Nation, when biotech critic Jeremy Rifkin warned of a world in which children “think of genes as patents,” Collins erased the query, asking, “Isn’t the right question: What benefits the public?” And when interviewer Gloria Borger asked whether the genome should be “the intellectual property of anybody,” Collins cleverly answered, “Not the whole thing.”
Venter is even more evasive. When Today’s Katie Couric asked Venter why he and Collins had agreed to “work together and make this information available to all people”—erroneously implying that Celera was releasing its genome data to the public—Venter humbly replied, “This is all of our genetic code.” When Couric asked whether Celera would “try to sell this information to make a profit,” Venter gave an artful non-answer: “Celera is helping pharmaceutical companies by interpreting the genetic code to help find some of these cures for diseases.” To deflect scrutiny from Celera’s “pharmaceutical partners,” Venter hurls populist rhetoric at alternative boogeymen: “If insurance companies can discriminate, they’ll be able to discriminate against all of us eventually because we all have genetic flaws.”
3. Racism. Venter and Collins, like President Clinton, tout similarities within the human genome. “We are all 99.9 percent the same at the DNA level,” says Collins. Venter adds, “There’s only one spelling difference every 1,000 letters in your DNA code between any two randomly chosen people regardless of what their ethnic background is.” To a racist, however, the denominator is irrelevant. (Venter inadvertently demonstrates this irrelevance, noting that human “sequencers are greater than 90 percent identical to proteins in other animals.”) Likewise, racists don’t care that there is more genetic variation within each ethnic group than between the average genomes of different ethnic groups. Who says all genetic differences are equal? Genetic information makes it easier for race-counters and race-sorters to define or redefine who is black, Hispanic, or ethnically Jewish.
4. Designer babies. Again, Collins and Venter duck the moral question by trading in their visionary proclamations for sudden skepticism. Having claimed “the potential to reduce the number of cancer deaths to zero during our lifetimes,” Venter dismisses the genetic modification of children as “science fiction.” Collins says designer-baby talk is “overblown,” because “things like intelligence or physical attractiveness or athletic ability … have very complicated genetic and environmental contributions.” According to this line of reasoning, complexity won’t deter companies from figuring out how to stop 10 different kinds of diabetes, but it will deter them from figuring out how to raise IQs.
5. Immortality. Clinton is obsessed with extending the human life span—he admits his selfish interest in the subject—and interviewers regularly raise the issue with Collins and Venter. Rather than stir up the attendant moral and religious controversy, the scientists steer the conversation back to disease prevention. On Nightline, when ABC’s Robert Krulwich asked about projections of people living 90 to 150 years, Collins answered, “First of all, we do have the opportunity … to move much more swiftly in identifying genetic predispositions to common illnesses that all too frequently cut down people before they should have been.” To a similar question on Face the Nation, Collins replied, “The goal right now is to try to understand and better treat diseases that cut people down all too early.” When forced to address longevity, Collins retreats into agnosticism: “Do we really want to try to extend our natural life span? … I think we could argue about that. Will we figure out how to do it? I’m not sure.”
6. Determinism. Both scientists reject genetic “reductionism.” “We are not helpless marionettes controlled by invisible strings made of double helixes. We still have free will,” says Collins. Venter adds, “The complexities and wonder of how the inanimate chemicals that are our genetic code give rise to the imponderables of the human spirit should keep poets and philosophers inspired for the millenniums.” But what’s the logic behind these poetic denials? According to Collins, the answer is that in addition to DNA, “We are still products of our environment, our interactions.” Venter says the same thing: “A lot of people want this to be genetic reduction as in genetic determinism,” but in fact, “We are so plastic as individuals. We respond so much to our environment.”
How comforting. We’re determined by our genes and our environment. We’re not wooden marionettes. We’re plastic. Plastic enough, perhaps, to be twisted away from dangerous questions by smooth-talking scientists who understand how a spoonful of sugar helps the medicine go down.