Personal Health

Babies by Design: A Public Health Promise or Social Justice Nightmare?

Whether we like it or not, genetic modification will be common in the near future -- so we had better start talking about it now.
We are rapidly entering the era of "reprogenetic" medicine. This combines new technologies of gene identification with assisted reproductive technologies like IVF and preimplantation genetic diagnosis (PGD) to permit parents to select the genetic traits of their children. Within the past two years Britain's leading genetic regulatory body, the Human Fertilisation and Embryology Authority, has authorized the use of PGD to help families with histories of breast cancer avoid transmitting the risk to their children. As the list of genetically influenced conditions grows, so will the range of conditions and traits available for parental choice. In the not too distant future we will move from embryo selection to targeted gene change, and the era of human genetic engineering will begin.

Human gene modification has the potential for great harm if it is carelessly introduced and allowed to proceed untended, but sooner or later we will begin to modify our genes, and we will survive doing so. In my book Babies by Design: The Ethics of Genetic Choice (Yale University Press, 2007), I argue that we are capable of bringing intelligence -- "design" in the best sense of the word -- to our reproductive lives. Eventually we will grow accustomed to a world where human beings use genetics to make themselves physically and mentally better than they are today.

To put this view in perspective, consider how far we have come without genetic self-modification. Two centuries ago human beings died at an average age of about forty, many people suffered from the effects of serious ailments such as polio or tuberculosis, and others bore obvious deformities, from disfiguring skin lesions to clubfoot or cleft palate. Modern medicine has changed all that, extending life spans and eliminating many physical and cosmetic problems.

According to Robert W. Fogel, a University of Chicago researcher on economic and population trends, new studies show that many chronic ailments, such as heart disease, lung disease, and arthritis, are occurring, on average, ten to twenty-five years later than they used to. There is also less disability among older people today. Thanks to better nutrition, disease prevention, and treatments, says Fogel, humans in the industrialized world have undergone "a form of evolution that is unique not only to humankind, but unique among the seven thousand or so generations of humans who have ever inhabited the earth." In the future genetics will help us continue this evolutionary trajectory.

The first steps in reprogenetics will continue and expand what is already underway: the use of these technologies to prevent the occurrence of serious disease conditions like cancer. Eventually, we will move beyond immediate disease prevention to enhancement, with the goal of making people "better than well." This includes improved disease resistance generally, greater stamina, longer life spans, and maybe enhanced mental acuity in the form of improved reading and computational skills. We will probably also see cosmetico-genomics, where parents use prenatal (or preconceptional) genetics to improve a child's height, reduce his or her chances of obesity, and even select skin or hair color.

Trait selection in our offspring is not new. Our choice of people we find attractive as sexual partners has always somewhat allowed us somewhat to select our children's genetic characteristics. Nevertheless, the deliberate genetic choice of a child's qualities scares many people. Babies by Design explores some of the leading ethical and religious concerns. A leading worry is the risks posed to children -- and future generations -- through mishaps in gene manipulation. As I do throughout the book, I use fictional literature (Greg Bear's unsettling short story "Sisters") to try to imagine this frightening possibility. I agree that the physiological risks are among the most serious concerns, but I argue that technologies are on the horizon (including reversible DNA changes) that will someday make gene interventions both safe and routine.

Will the ability to select a child's traits deform parenting, changing it from unconditional acceptance to an emotionally destructive search for perfection? Will it transform the child from a "gift" to a consumer project? I argue that this frequently voiced concern is overblown. Parents seeking an abled child love a disabled one. Parents seeking an enhanced child will love whatever child they get. The very intensity of the parental love that critics see as at risk is the best protection against the erosion of that love. By increasing parents' knowledge of their child's aptitudes, some gene modifications may actually improve parenting skills.

Some fear that genetic interventions will limit a child's freedom. Instead of being able to see his or her life as "self-created," the child will have to attribute all successes or failures to parental programming. But this argument mistakes genetic ignorance for freedom. We are all shaped, in part, by our genes. Knowing what those genes are neither reduces freedom nor diminishes our opportunities for personal choice.

Will gene enhancements undermine social justice as the affluent use their money to buy superior competitive skills, leading eventually to a permanent "genobility"? Will it lead to a new outbreak of the kind of eugenics that so blighted the reputation of genetics in the twentieth century? Both these risks exist. Drawing on my background in ethics, I offer the possibility that genetics may become a tool for enhancing social justice. Instead of merely redistributing the economic fruits of talents, as progressives have traditionally urged, we can begin to imagine a society where talents themselves, especially better physical stamina and better cognitive skills, are more widely shared. Although most of the problems that foster social injustice are unrelated to our genes, some do have a genetic origin. Poor reading and computational skills may be examples. If we are to address these problems, we will have to make sure that needed genetic interventions, like vaccines, are freely available to all members of society. As far as the fear of eugenics is concerned, the proper response, I believe, is not prohibition but greater respect for informed parental choice. Does gene enhancement amount, as some believe, to a dangerous and prohibited "playing God"? What are we to say about this religious objection? It is a view, I observe, that rests on the belief that the human genome in its present form is the untamperable epitome of creation. But nothing in our religious traditions supports this. Biblical faith sees human beings as God's co-creators in all respects and never bans technical innovations, including interventions in the human body. Nor does science support the view that the genome has reached its final state. New research discloses important changes in our neural architecture as recently as a few thousand years ago. Here, I explore the work of the African American science fiction writer, Octavia Butler, who sees resistance to genetic change as allied with patriarchy and racism, and who sketches a future where human beings embark on a spiritual journey of openness to gene mixing and self-transformation.

Babies by Design ends with a review of the regulatory options. Although I deeply admire the approach to reprogenetic oversight represented by Britain's Human Fertilisation and Embryology Authority, I believe that such an approach will not work everywhere. Drawing on my experience as a member of President Clinton's Human Embryo Research Panel, I predict that any form of centralized regulatory authority in the United States will quickly become the tool of conservative forces, leading to the same kind of restrictive regulations on IVF and other reproductive technologies that Italy is now experiencing. In its place, I urge a pluralistic approach that relies on decentralized regulation, professional standards, common law, and parental education.

Babies by design are in our future. While some will try to prevent this from ever happening, others want unfettered freedom to experiment. The challenge is to find a middle way, and the time to start talking about it is now.
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