The Dartmouth Review

Original Article: http://dartreview.com/archives/2008/04/21/babies_by_design_a_brave_new_world.php

Babies By Design: A Brave New World?

Monday, April 21, 2008

BOOK REVIEW

Babies By Design
Ronald M. Green
Yale University Press, 2007

Watson and Crick’s famous 1953 article revealing the double-helical structure of DNA inspired a wave of intense scholarship aimed at understanding and admiring the complex, yet elegant blueprint of life. However, today we are in the midst of a powerful shift. Researchers have moved beyond passively admiring this code to directly modifying it. Ronald M. Green, a professor and director of the Ethics Institute at Dartmouth College, describes the promises and perils of this new era in his most recent book, Babies by Design: The Ethics of Genetic Choice.

— The author, Professor Ronald M. Green —

Professor Green observes that gene modification is already a reality, with even more influential advances certain to follow. In response to this simultaneously exciting and alarming fact, he takes a measured view: he is neither a genomic Luddite nor a radical transhumanist. He is optimistic about many of the potential benefits of gene modification. To Professor Green, “babies by design” are practically inevitable, but it is up to us to incorporate gene technology cautiously and responsibly. To this end, he raises a host of difficult ethical questions whose answers pertain to our role in shaping the direction of our own evolution. Gene modification is often depicted in dramatically negative terms—as the foundation for bleak, dystopian worlds. President Bush has tried to initiate a “bioethical retreat” by limiting federal support for genetic research and appointing the highly conservative bioethicist Leon Kass to direct the Council on Bioethics. However, since the Human Genome Project completed its sequencing of three billion paired genetic letters in April 2003, there has been an explosion of developments in the field. Genetic engineering may be roughly divided into two categories: treatment and enhancement. Treatment seeks to cure and prevent disease, whereas the more controversial concept of enhancement seeks to improve normal form and function. Green provides abundant examples of the applications of each. Treatment is already a reality: “Thousands of couples that carry a genetic disease and want to avoid transmitting it to their children now use preimplantation genetic diagnosis, the genetic screening and selection of early embryos produced by in vitro fertilization.” While testing for cystic fibrosis seems justifiable (unless you have qualms about discarding the affected embryos), screening for sex, hair color, and a long list of other non-pathological characteristics is a pronounced, but already feasible, step away from screening for diseases. In fact, screening for a non-disease characteristic already occurs in the form of so-called “savior children.” Researchers have screened for embryos of a certain immune system profile so that the resulting child may serve as a bone marrow donor to an ailing older sibling. Is the use of savior children ethical? At the very least, it seems to entail a slippery slope to screening for a wide array of non-disease conditions. Beyond merely screening, researchers have successfully changed human DNA as well. For example, researchers have tried to correct a rare genetic disorder known as X-SCID, which is like “a genetically inherited, as opposed to virally induced, form of AIDS.” In 2000, researchers in Paris used a retrovirus to insert the correct DNA into ten children with X-SCID. Overall, the study was a success. Nine of the ten children were cured of the disease; however, three of the children contracted leukemia—a reflection of our limited ability and understanding and the unpredictable misfortunes that can result. More problematic are potential enhancements. Researchers have begun isolating genes associated with intelligence, physical strength, longevity, and other coveted assets. Green observes that professional athletes who often go to enormous lengths to gain an advantage, are likely to take advantage of advances in genetic engineering. Will “gene-doping” destroy sports as we now value them? Or will it eliminate the “genetic lottery” unfairly played at birth and elevate the game to a new level?


One concern is the problem of positional advantage. Sports are competitive; that is, the goal is to be better than others. Some argue if everyone has access to genetic modifications, no one really benefits. However, others note that, realistically, to be a basketball player today, one must be given the genes to be tall at birth. Gene modification can eliminate this arbitrary restraint, putting greater emphasis on desire and will. Another ethical concern with enhancement is that genes are not fully understood scientifically and there is therefore always the chance for errors. Doesn’t putting an athlete at risk for superficial benefit violate a doctor’s first obligation to “do no harm?” Perhaps, but in a world where cosmetic surgery is frequently sought and performed, such questions become more difficult to answer.

Blurring the line between treatment and enhancement are advances like a possible new HIV-gene vaccine. Researchers have discovered a small subpopulation with a variant form of a gene for a receptor on the surface of human cells, which prevents HIV from infecting them. Scientists may be able to develop a vaccine that works by changing our genes. Considering the dire toll AIDS is taking on many parts of the world, should we administer this vaccine even though it begins to cross the line from treatment to enhancement?

A further distinction can be drawn between “somatic cell gene therapy” and “germline gene therapy.” The former involves the modification of the non-sex cells in an individual, so that changes last as long as the cells are alive. In contrast, germline gene therapy involves changes that will be passed on from generation to generation. The latter seems much more problematic: “If a clinician makes a mistake in germline gene therapy, the clinician has created a new genetic disease that could be passed on from generation to generation, affecting uncounted numbers of people. It is as though the clinician inadvertently introduced a new form of cystic fibrosis or sickle cell anemia into the human population.”

Nevertheless, germline gene therapy can be appealing. If we can eliminate an inherited genetic disorder from a family line, shouldn’t we do it? One concern, aside from the danger of modifications gone awry, is that gene therapy will harm the human species as a whole by diminishing our genetic diversity. Green explains the “heterozygote advantage.” Many of the diseases we might try to eliminate actually serve a purpose when a person carries only one copy of the variant gene; a heterozygote carrier of a disease gene does not express—or is not afflicted—by that disease. The classic example is how carriers of sickle-cell anemia are resistant to malaria. Similarly, researchers believe that carriers of cystic fibrosis have greater immunity to cholera and Tay-Sachs disease may protect against tuberculosis. In general, how concerned should we be about the homogenizing effect of gene therapy?

Green takes particular note of the danger of creating a “genobility.” The titanic cost of gene research makes it seem inevitable that those with power and wealth will have greater access to the benefits it yields. Over time, there is the risk that gene therapy will create an ever widening genetic rift between those with access and those without, similar to the world of Eloi and Morlocks, as envisioned by H.G. Wells.

Furthermore, how will genetic engineering affect the role of the family in society? To what extent do parents have the right to engineer their child? How will parental engineering affect a child’s sense of freedom and accomplishment? Many opponents argue that gene modification will create a dynamic built on unfair expectations between parents and children because parents are no longer guardians but “gardeners.”

Also, should increasing longevity always be a goal? Bioethicist Leon Kass has argued that the current human lifespan is ideal. In addition to population concerns, increased longevity will have broad social and economic ramifications. For example, there is the risk that “the succession of generations could be obstructed by a glut of the able.”

Finally, does gene modification intrude on the sovereignty of God? Many have likened gene research to the Tower of Babel—the paragon of human pride. According to one survey, seventy percent of Americans believe that the power to control genetic traits should remain in the hands of God. Even outside of religious terms, many opponents have doubts about our ability to keep genetic tinkering within our own control.

On most of these questions, Green answers in favor of moving forward, but cautiously. Green tries to avoid what he calls the “status quo bias”—an irrational preference for the status quo. To uncover this bias, he points to similar historical changes, like the dramatic increase in lifespan of the last century, which we retrospectively appreciate.

Overall, Dartmouth professor Ronald Green’s Babies by Design is less about the answers than the questions. But given the freshness of this field, the questions are certainly provocative, and require thoughtful and definite responses.