Drawing the line between preventing ailments and bestowing genetic advantage.

Genomic research has been on a sprint since 2003, when researchers with the International Human Genome Project completed their map the nucleotides that form human DNA. Some researchers believe that in the next few years, science will be able to recognize and possibly eliminate a most of the world’s congenital diseases (through a process called preimplantation genetic diagnosis, or PGD) and better treat many other diseases at the cellular level.

Genomics may also enable otherwise healthy individuals to change their own DNA to improve athletic prowess or brain power, or allow the wealthy to artificially conceive genetically "superior" offspring. As new gene treatment options spring into existence, many people are seeking the line between legitimate gene therapy and superhuman enhancement.

“The conceptual problem arises the moment we consider that some of our most valuable medical interventions are enhancements,” writes bioethicist Ronald M. Green in Babies by Design: The Ethics of Genetic Choice. “Vaccines are a leading example. Almost no one is naturally immune to smallpox, polio, measles, whooping cough, or any of the other diseases that we vaccinate against.

"When we are inoculated, the DNA in our white blood cells undergoes irreversible genetic changes, initiating the synthesis of antibodies to many viruses and bacteria. Vaccinations make us superhumans, but no one ridicules enhancements of this sort. In most places in the United States and other industrialized countries, a child cannot enter school unless he or she is vaccinated,” Green points out.

There are several types of genetic enhancement, each with its own ethical, and practical, strengths and weaknesses.

Somatic gene modification involves treating or changing the adult genes in a patient. A hypothetical example of somatic enhancement would be gene doping, in which an athlete takes a substance to “trick” his DNA into producing more testosterone on a regular basis.

Alternatively, germline gene modification is done before birth, usually during the embryo stage. A Germline therapy for immunodeficiency could involve removing the sickle cell anemia gene from a developing embryo. One example of germline enhancement would be imbuing a developing embryo with certain characteristics seen as desirable, thus "designing a baby."

Somatic therapy is the less controversial of the two. Many researchers believe it holds the most promise, though meaningful breakthroughs in somatic therapy are still several years away.

Germline therapy may be more practically achievable. According to the Johns Hopkins Genetics and Public Policy Center, PGD has been used to screen for 1,000 genetic disorders. The therapy is also more provocative.

“I have been in the gene therapy field since 1987,” says Dr. Markus Grompe, a fellow at the conservative Westchester Institute for Ethics and the Human Person. “It was very clear from day one that [genomics] could be used to change our species genetically by manipulating the germ line, i.e. making transgenic humans. There has been a consensus from day one that this would be off limits, ethically." Leon Kass, head of the President's Council on Bioethics has likewise argued against tampering with the human genome.

Inoculating children in the womb against serious diseases or disorders is not, on its face, controversial. But is manipulating cells to guard against traits that are merely undesirable ethical or unethical? Who gets to draw the boundary? As Green points out in his book, physical unattractiveness, or even plainness, can have real consequences over the course of human lifetime in terms of lost status and earning power. Is homeliness a disorder that should be treated genetically? What about being of a certain sex? The Mastertons, a British family, made headlines in the United Kingdom when they appealed to the government's Human Fertilisation and Embryology Authority for the right to determine the sex of their offspring by screening the fertilized eggs to be implanted. The Authority denied the request. Couples in the United States can use PGD to screen their baby's sex without restriction.

Babies by Design suggests four basic principles for distinguishing between gene manipulation that is ethical and that which is somewhat less than scrupulous.

1. Genetic interventions should always be aimed at what is reasonably in the child’s best interests. “A child’s likely consent is a rough-and-ready first test," writes Green, "but it should always be measured against the broader standard of what the larger community regards as being reasonably in the child’s best interests."

2. Genetic interventions should be almost as safe as natural reproduction. According to Green, parents' wishes are an important part of the moral equation in determining what is ethical and what isn't. These wishes, he says, "have weight and should be respected so long as the child is not likely to be seriously harmed. . . . Where enhancement is concerned, we should factor into our thinking the prospect of added benefit for the child. If rational adults can invite some risks in undergoing cosmetic plastic surgery or a laser eye procedure, parents can also accept some added risk for their future child to give these benefits.”

3. We should avoid and discourage interventions that confer only “positional” advantage. “Some requests for gene enhancements, like sports doping, could produce a tragedy of the commons," argues Green. "Parents seeking a sports champion might try to have a child with an elevated red blood cell function. At its extreme, this request could significantly increase the child’s risk of heart disease. Once many other parents started doing the same thing, the result would be no competitive advantage for anyone—bought at the price of increased health risks for all."

4. Genetic interventions should not reinforce or increase unjust inequality and discrimination, economic inequality, or racism. “Gene enhancements could widen the gap between the haves and the have-nots,” Green points out. “We should think of effective ways or either controlling or increasing access to them.”

Regardless of whatever guidelines governments enact, individuals frightened by the potential of gene science—or offended by the mere notion of it—will surely persist in the belief that the human genome is too precious to be tampered with. Yet, millions of others will likely turn to genetic science to help safeguard their children against disease, confer desired traits, or even imbue their offspring with physical or mental advantages. Just as the science of genetic manipulation is only in its infancy today, so the debate about what constitutes ethical genetic enhancement has barely begun. —Patrick Tucker

Source: Babies by Design: The Ethics of Genetic Choice by Ronald M. Green. Yale University Press. 2007. 270 pages. $26.
Society
January-February 2008 Vol. 42. No 1.

Genetic Ethics and Superbabies