From the Archives: Creating Nature III (Chapter Six of The Future and Its Enemies)
What makes a condition "unhealthy" is not that it is "unnatural" but that it interferes with human purposes.
Girl with cystic fibrosis, photo by SDI productions for iStockphoto
Since I wrote 25 years ago, I am happy to say that Sam has flourished, thanks to what are known as CFTR Modulator Therapies. He is now in his fifth year as an art teacher of young children. Gene therapy hasn’t delivered on its initial promise, although people are still working on it. George W. Bush appointed Leon Kass as the chair of his bioethics advisory committee, where he worked to advance his view of “natural norms” until rudely interrupted by 9/11, which sucked all the attention away from efforts to rein in biotechnology. Suzanne Tomlinson Pattee is now regulatory counsel in the FDA’s Office of Medical Policy.
Sam, tow-headed and full of energy, zips across the lawn with the back-and-forth gait that gives toddlers that name. He is a year and a half old and joyfully exploring new territory. Tired, he sacks out on the grass, shaded by his mother and by my husband, conversing at a college reunion. The biggest threat to this good-natured little boy appears to be that I will inadvertently step on him. (I miss, barely.)
But the wristband on Sam’s arm, a name tag from the reunion’s kids’ program, contains a warning: As healthy as he looks, Sam has cystic fibrosis. Only three months earlier, he spent nine days in the hospital with pneumonia. A steady stream of antibiotics accounts for his apparent health, and twice a day his parents must pop their cupped hands against his chest in “percussive therapy” to loosen the mucus that would otherwise clog his lungs.
About 30,000 Americans have CF, which until a few decades ago killed its victims by the time they reached their teens. Better drugs and other therapies have extended life spans and freed people with the disease from frequent hospitalization: When Suzanne Tomlinson was diagnosed in 1964, her parents were told she might not live long enough to attend kindergarten. She is now a law school graduate who works as a bioethics counselor for the Biotechnology Industry Organization, supporting the research to which she feels she owes her life. Sam’s mother tells me about a 60-year-old man active in Internet CF groups, a role model and inspiration. Still, cystic fibrosis remains a painful and ultimately deadly disease, killing most of its victims by their 30s.
Sam, however, has better chances. Time is on his side. Scientists are pushing hard to find a way to deliver corrective genes to respiratory system cells: The idea is to reprogram enough of those cells that the body will stop overproducing mucus. The research has gone more slowly than people hoped when the CF gene was isolated in 1989, but it is progressing steadily, spurred by biotech’s usual combination of idealism, ambition, curiosity, and greed. Eventually, researchers hope to do more than fix individual cells, which die and are replaced by other cells that also need reprogramming. They envision gene therapy that will correct the problem at its source, making cells reproduce and grow without the defect. “This is an art,” as Shakespeare said, “which does mend Nature, change it rather.”
The very idea makes Bill McKibben sick. If the greenhouse effect doesn’t end nature, he suggests, then genetic engineering will—and, worse yet, it will do so on purpose. Even if biotechnology works as well as advertised, which McKibben concedes “seems probable,” it will make the world thoroughly phony, “a shopping mall, where every feature is designed for our delectation.” That prospect is intolerable. “The end of nature sours all my material pleasures,” he writes. “The prospect of living in a genetically engineered world sickens me.”
Rearranging genes—treating them as components that can be recombined to meet human wants—is hardly our first venture in defying our given bodily natures. But genetic engineering extends artifice to a more fundamental level than did circumcision or Caesarean sections, hair coloring or artificial hips, contact lenses or heart transplants. It fiddles with the generic As and Bs that control (in extremely complicated ways) how we turn out. To alter Sam’s genes so that he did not have cystic fibrosis would be to make every cell in his body artificial, directed to conscious human purposes. This art would not eliminate natural processes, but it would dramatically recreate them, as Renaissance gardeners changed the nature of tulips.
And it would open up a new infinite series. We imagine not a single standard of biological perfection, but many different desirable possibilities, depending on our tastes and goals. (Given the complex ways that genes appear to interact, it’s unlikely that we can make combinations without tradeoffs.) And we aren’t likely to ever be fully satisfied. Each improvement generates ideas for others.
Stasist critics warn that rather than face this weird-sounding biological future, we should just say no to all genetic engineering. Jeremy Rifkin, whose books on the subject McKibben praises, cautions against using gene therapy even to cure children like Sam. “Once we decide to begin the process of human genetic engineering,” he writes in Algeny, “there is really no logical place to stop. If diabetes, sickle cell anemia, and cancer are to be cured by altering the genetic makeup of an individual, why not proceed to other ‘disorders’: myopia, color blindness, left-handedness? Indeed, what is to preclude a society from deciding that a certain skin color is a disorder?” People see health as a continuum with no obvious stopping point; once a condition they dislike is medically correctable, they want to do something about it. To avoid this infinite series, therefore, Rifkin demands a bright line: no genetic engineering of any kind.
Other biotech critics take a seemingly more moderate approach. The influential conservative bioethicist Leon Kass tries to draw the line at curing diseases, citing a “natural norm” of health. But this idea, like the notion of a single “natural” ecological state, falls apart on examination. Human beings in different times, places, and circumstances suggest different definitions of health; many of our biological characteristics evolved in environments in which we no longer live; and what’s good for the species may not be good for a particular person.
The sickle-cell trait offers protection against malaria, a benefit to the species and in that sense a norm, but at the cost of giving lethal sickle cell anemia to people who inherit traits from both parents. A marathon runner and a boxer may be in peak condition, but what is healthy for each will be different. Barring technologies such as vitamin D supplements or sunscreen, the wrong skin color may indeed be a “disorder” in certain latitudes: Dark-skinned people face vitamin deficiencies in Scandinavia, while the pale risk serious sun damage in the tropics. Because of her low body fat, a top female marathon runner probably will not menstruate, a serious deviation from the natural standard of health; yet she may be, by other standards and her own goals, among the healthiest women on the planet. And fertility, which surely must be the “norm: for pre-menopausal adult females, is something many women seek medical intervention to avoid. So, for that matter, are the normal symptoms of menopause.
Does Olympic champion Elaine Thompson-Herah fit a “natural norm”? Photo: PxHere.com.
Contrary to Kass’s notion of a “natural norm,” health is not a static standard but a condition defined by the lives people want to lead. Some things are clearly unhealthy—heart attacks, for instance—but that is because they interfere with just about any imaginable human goal. Aside from such extreme cases, different goals will produce different choices about tradeoffs and standards. There is no reason to think that biotechnology, however powerful, will make it possible for someone with a sumo wrestler's physique to also run the marathon efficiently. What makes a condition "unhealthy" is not that it is "unnatural" but that it interferes with human purposes.
Kass’s “natural norm,” however, deems only a very narrow range of biological limitations are worthy of medical intervention. He accepts infertility, treats the extension of life expectancy by even 20 years as perverse, and condemns the “desire to prolong youthfulness.” He issues a blanket condemnation of "our dissection of cadavers, organ transplantation, cosmetic surgery, body shops, laboratory fertilization, surrogate wombs, gender-change surgery, ‘wanted’ children, ‘rights over our bodies,’ sexual liberation, and other practices and beliefs that insist on our independence and autonomy.” Kass’s “natural norm” of health accepts a lot of conditions that many, many people would like to avoid.
In this sense, Rifkin’s assessment is basically correct. On a theoretical basis anyway, “there really is no logical place to stop” genetic interventions. At least some individuals will always be able to imagine a body better suited to their purposes. And even Kass admits that the general public does not honor his notion of health as a static, natural standard. “One feels that people are finding the natural boundaries of life unacceptable,” he told The New York Times when a sixty-three-year-old woman had a baby with the help of in vitro fertilization and embryo transfer, adding that “once you go that route, there’s absolutely no limit.” His comment was less about the specific case at hand than about the general, open-ended drive to let individuals shape their biological destinies.
If health is not a static norm, then Rifkin is right about the line between nature and artifice: The only way to protect “natural” genetics is to prohibit all interference with human genes, even if that means letting children suffer genetic diseases. We can’t pick and choose our purposes, calling some “natural” and some “artificial.” Whether we like it or not, genetic engineering is unnatural. It turns our basic genetic components into human artifice.
While ecology raises questions about what nature is really like, undercutting the idea of a single natural standard, biotechnology thus forces us to confront a more basic question: Suppose that we do have a standard of the natural. Does that make what's natural right and what’s unnatural wrong? Does nature draw lines we are morally bound to respect? Is “the natural” an ethical trump?
For more on nature and artifice, see this recent column, “Natural and Ethical Are Getting a Divorce.” I’m currently working on a longer feature on the topic.
Call for Entries: I’m running a contest for art and writing depicting a positive vision of the future or recent past. That’s a simplified version. The details are at the end of this post.
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