Anything for an edge

In her 1983 novel, Geek Love, Katherine Dunn wrote about a carnival family who saved their show from bankruptcy by deliberately reproducing “special people” who would work as carnival freaks. Lil, the mother, injected arsenic and radioisotopes into her pregnant body so as to conceive mutant children who would be able to earn a living in the carnival. One child had limbs like flippers, another was a bald albino hunchbacked dwarf. “What greater gift could you offer your children than an inherent ability to earn a living just by being themselves?”

Gene manipulation seems less gross these days, but the sentiment is similar. Daniel Koshland, former Editor of Science, sounded much like Lil when he asked: “Is there any argument against making superior individuals? The demand for genetic enhancement will probably be very large – to give your children a better chance of success in the world.” Reflecting this demand, the International Olympic Committee has discussed the potential use of genetic engineering to improve the performance of athletes. In the intensely competitive environment of international sports, with all its financial incentives, athletes are willing to take great risks to improve their chances of success. “Anything for an edge.”

Lil, Koshland and the Olympic athletes are all evaluating people based on their genetic worth, and they are justifying genetic engineering according to a commercial calculus. Children, especially, are often regarded in terms of their economic potential. Babies these days are “made to order” as parents specify the desired characteristics – education, looks and special talents – of egg and sperm donors. Gametes are advertised according to their potential value – their likelihood of developing into successful persons. And “designer babies” are no longer just the stuff of science fiction. There is growing interest in controlling the quality of offspring – in buying desirable characteristics, and even perfection, through gene enhancement.

Commercial interests, consumer values and scientific hubris have converged to fuel the practice of gene enhancement. Commercial interests feed on parental anxieties, hopes and expectations in the age of genetics. In a preview of what is to come, a company in North Carolina sponsored height tests of children in order to persuade the parents of short children to inject them with genetically engineered growth hormone. The US Food and Drug Administration (FDA) had approved the hormone for use “in children with a lack of adequate endogenous growth hormone secretion”. But parents have requested the drug for children of normal height, in order to enhance their chances in playing basketball. As one father put it in a news interview: “You want to give your child that edge no matter what. I think you’d do anything.” A March of Dimes Survey reported that 43 per cent of Americans approve of using gene therapy to enhance the physical and behavioural traits of children, as well as to resolve problems of genetic disease.

Gene enhancement has consumer appeal in a society where people look to pharmaceutical interventions to improve athletic, cognitive, or sexual performance, and seek costly, painful and often risky cosmetic surgery to improve appearance. Plastic surgery, anabolic steroids and silicone breasts are all preludes to gene enhancement. The gene business thrives on cultural beliefs in endless progress, a disdain for limits, and a belief in technological – and now genetic – fixes. The body can be manipulated, designed, and engineered. Heredity can be overcome.

Scientists have encouraged the beliefs underlying popular interest in gene enhancement. Years ago, an advocate of gene therapy, French Anderson, promised that “physicians will simply treat patients by injecting a snippet of DNA and send them home cured”. Geneticist Richard Mulligan announced in the media, “We can use gene transfer to make a cell do whatever we want. We can play God in that cell.” Biologist Leroy Hood wrote about “circumventing whatever limitations your genes impose on you”.

Today, some scientists are promoting “germline” engineering, which will affect the characteristics not only of the individual but also of future generations. Germline genetic engineering involves the insertion of genetic material into the pre-implantation embryo at a point when the cells are still developing and dividing. The idea is to “fix” children with debilitating genetic defects, but the technique would also allow the enhancement of desirable traits. Germline therapeutic procedures offer a direct route to manipulating genetic expression in human beings. Affecting subsequent generations, its raises significant ethical questions, especially when used to enhance desired traits. But advocates are enthusiastic. James D. Watson has argued that “Germline therapy will probably be much more successful than somatic therapy”. He dismisses objections and concerns as “utter silliness”. “If we could make better human beings by knowing how to add genes, why shouldn’t we do it?”

In March this year, scientists working on a treatment for infertility transferred cytoplasm from one egg into another in order to overcome cytoplasmic defects that were preventing normal embryogenesis. They called their experiment “the first case of human germline genetic modification’. By intentionally transmitting mitochondrial DNA to human offspring, they were effectively altering the germline and opening the possibility of using reproductive technologies to shape future children. A female created by this procedure would pass the new DNA on to her offspring.

The media have amplified the promises of genetic manipulation, not only to overcome serious genetic defects, but also to enhance mental capacities, physical traits and personality characteristics. Advocating germline human genetic manipulation, the philosopher Gregory Pence asks: “Would it be so terrible to allow parents to at least aim for a certain type, in the same way that great breeders… try to match a breed of dog to the needs of a family?”

This language of animal breeding was prevalent during the eugenics movement of the early twentieth century. Genetic enhancement was a collective project at that time. Both scientists and public officials promoted certain reproductive policies and practices. Positive eugenic policies encouraged the “fit” to reproduce: negative eugenics discouraged reproduction among those deemed “unfit”. The point was to enhance the genetic quality of the population. Today, however, gene enhancement is a commercial project, directed to individuals to improve their competitive advantage.

If it is assumed that something can be done to enhance the body or behaviour, would this not lead to a decline of tolerance for those who are different? What, indeed, is the standard of normality? The Boston-based Committee for Responsible Genetics argues that, if germline gene therapy is used, it will not be long before “any child who doesn’t measure up to some arbitrary standard of health, behaviour or physique, is seen as flawed”. Furthermore, the use of gene therapy to enhance performance would force others to change their make-up if they are to compete.

A new kind of inequality will emerge – between those who can afford genetic services and those who cannot. Like cosmetic procedures, high-cost genetic services are not likely to be reimbursed by public or private insurance programmes and access would be limited, based on wealth. Somatic enhancement, such as human growth hormone, costs an average of $30,000 per child, and there are in the United States, about 1.7 million children in the lowest, 3 per cent of the population in terms of height. Gene enhancement treatments could lead to the creation of a new social class comprised of those with superior genetic endowment. Wealth-based access to genetic enhancement creates a moral challenge, but it may also be a political threat, a basis for class warfare between what Lee Silver has called the “gen-rich” and the “gen-poor”.

The commercial stakes, in promoting both genetically engineered pharmaceutical products and genetic services, are high. Sales of gene-therapy services are predicted to reach $3.5 billion by 2005. The sales are expected to be greatest in the provision of services for gene enhancements. The potential mega-market for gene products is already evident in advertisements: “Bad Genetics? Just what the doctor ordered. Use Opti-genetics, the first genetic optimizer.” This product is advertised to “maximize your genetics to rapidly synthesize protein into more muscle mass”.

Regulating the gene-enhancement business will be difficult. There is a regulatory vacuum in the case of research that is supported, not by government with its review boards and rules for open communication, but by private industry, where there are few requirements for public disclosure, and limited regulation. Nor are regulatory bodies equipped to deal with the social and ethical issues involved in new scientific developments. In the United States, regulation focuses on the safety and efficacy of products rather than on their social or ethical implications. Europeans have been more willing to consider social and ethical issues, addressing germline gene therapy through the broader framework of international human-rights law. The European Commission has stated that technologies that alter the human genome would compromise human dignity and are, therefore, unacceptable. Germline therapy has, to date, been effectively banned.

Just as performance enhancing drugs have proliferated – available in some foreign markets – so too will offshore or black-market genetic-enhancement services. The problems of regulating genetic manipulation are compounded by the difficulty of distinguishing between therapeutic and enhancement uses. Existing products that are already approved by regulatory agencies can be diverted from approved therapeutic uses to off-label enhancement applications. For example, a genetic treatment called BioByPass, used to foster growth of blood vessels in heart tissue to avoid the need of bypass surgery, can also be used to grow blood vessels in healthy skeletal muscles to give athletes greater strength. The uses – for therapy or for enhancement – are all in the packaging by biotechnology firms.

Commodification of genetic products raises many questions. Will technology firms, concerned about creating a market for their products and services, influence the definition of normalcy and disease? Clearly, commercial interests have expanded the consumer demand for cosmetic services. Why not for gene enhancement? What is the difference between providing braces to straighten teeth and providing a hormone to increase height or a gene to improve memory? What is pathological or normal? Enhancement or treatment? How does one define enhancement anyhow? Should runners who are trained at sea level be allowed to boost genetically their oxygen-carrying capacity so as to compete with those who live at high altitudes? Why not use enhancement to “level the playing field”? Is giving a child, through genetic therapy, what another child might already possess enhancement or simply fairness?

Perhaps the most difficult issues are suggested by Lil’s justification for deliberately conceiving mutant children as carnival commodities. At a time when aggressive commercialisation is invading nearly every sector of human life, the new genetics - the possibility of gene enhancement - is reshaping the way we think about children, fostering perceptions of children as commodities. Conceived as products as well as persons, their future value lies not only in their human worth, but in their biological potential for success in the commodity culture – a potential that now can be manipulated, enhanced and engineered.

Reprinted with permission of The Times Literary Supplement