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Babies by design: the ethics of genetic choice

21 January 2008
By Dr Ronald M Green
Eunice and Julian Cohen Professor for the Study of Ethics and Human Values, Dartmouth College, US
Appeared in BioNews 441
Since the middle of 2007, three books have appeared exploring the ethical issues raised by human genetic self-modification and gene enhancement: Michael Sandel's The Case against Perfection (Harvard University Press), John Harris's Enhancing Evolution (Princeton University Press), and my own Babies by Design (Yale University Press). Sandel's book continues the critique of gene manipulation that he championed as a member of President Bush's Council on Bioethics. Harris takes the opposite tack, arguing not simply that human gene enhancement is allowable, but that it should be morally obligatory for parents and society.

My position stands somewhere between these two. I lean toward favoring parental autonomy: the right of parents to undertake genetic changes that they believe will benefit their child and enhance his or her life prospects. I am leery of governmental interventions, whether for or against parental choices.

Unlike Sandel's or Harris's books, Babies by Design pays special attention to the scientific and medical aspects of human gene modification. Opening chapters examine emerging techniques of reproductive and genetic ('reprogenetic') manipulation. I observe that the use of embryo selection to avoid inherited disease (even late onset disease and carrier status) is already here. In the not-too-distant future, we will see the first attempts at gene alteration through precise gene targeting techniques. Eventually, we will move beyond immediate disease prevention to enhancement, with the goal of making people "better than well." This includes 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 a child's skin or hair color.

Beyond the science, Babies by Design explores the leading ethical and religious concerns raised by these possibilities. One is the risks posed to children - and future generations - through mishaps in gene manipulation. As I do throughout the book, I use fictional literature (here, 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 worries, but argue that technologies are on the horizon (including reversible DNA changes) that will someday render gene interventions both safe and routine.

Will the ability to select a child's traits deform parenting, transforming it from unconditional acceptance to an emotionally destructive search for perfection, as Michael Sandel argues? Will it transform the child from a 'gift' to a consumer project? I regard this concern as 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 parental love that critics like Sandel seek to preserve is the best protection against its erosion. Some gene manipulations may actually improve parenting skills.

Will gene enhancements threaten social justice as affluence combines with superior competitive skills to produce an enduring '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 justice theory, however, I offer the possibility that genetics may become a tool for enhancing social justice. Instead of merely redistributing the economic results of talents, as John Rawls argued, we can begin to imagine a society where those talents themselves, especially better physical stamina and greater facility with reading and computational skills, are more widely shared. The proper response to the eugenic threat, I believe, is not more state intervention into private life through genetic prohibitions but greater respect for parental choice.

What are we to say about the religious objections? Does gene enhancement amount, as many believe, to a dangerous and prohibited "playing God"? This view, I observe, 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. I close with a discussion of the work of the African-American science fiction writer, Octavia Butler, who sketches a future where human beings embark on a spiritual journey of openness to genetic change.

The book ends with a review of the regulatory options. Although I deeply admire the approach to reprogenetic oversight represented by Britain's HFEA, 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 centralised regulatory authority in the US will quickly become the tool of conservative forces, leading to the same kind of restrictive regulations that Italy is now witnessing. In it 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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