Abstract
How might a liberal democratic community best regulate human genetic engineering? Relevant debates widely deploy the usually undefined term "human dignity." Its indeterminacy in meaning and use renders it useless as a guiding principle. In this article, I reject the human genome as somehow invested with a moral status, a position I call "genetic essentialism." I explain why a critique of genetic essentialism is not a strawman and argue against defining human rights in terms of genetic essentialism. As an alternative, I propose dignity as the decisional autonomy of future persons, held in trust by the current generation. I show why a future person could be expected to have an interest in decisional autonomy and how popular deliberation, combined with expert medical and bioethical opinion, could generate principled agreement on how the decisional autonomy of future persons might be configured at the point of genetic engineering.
Highlights
How might a liberal democratic community best regulate human genetic engineering? Relevant debates widely deploy the usually undefined term “human dignity.” Its indeterminacy in meaning and use renders it useless as a guiding principle
How might human genetic engineering best be regulated? I responded to this question by rejecting, as a regulative principle, a genetically essentialist notion of human dignity
I pursued instead a consequentialist notion of human dignity as the future person’s decisional autonomy, held in trust by the current generation as it deliberates about genetically engineering the embryo from which that future person will develop
Summary
Human biology and cultural norms sometimes intersect in the politics of health even as the respective spheres of health and politics pursue distinctly different objectives. (a) Health norms seek a path from illness to health whereas (b) political norms offer ways to evaluate that path in terms of socially constructed norms. The 1997 Convention for the Protection of and Dignity of the Human Being with Regard to the Application of Biology and Medicine (hereafter the Oviedo Convention) — the first legally binding international instrument regulating biomedicine, binding some European nations — states that the abuse of human germline genetic engineering “may endanger the individual and the species itself” Its preamble identifies a “need to respect the human being both as an individual and as a member of the human species” and to recognize the “importance of ensuring the dignity of the human being.” These various instruments practice what I call “genetic essentialism.”. Genetic essentialism is rather a kind of folk biology; it construes our species teleologically It depicts an evolved life form as an otherworldly essence that entails human dignity. The U.S President’s Council on Bioethics (2002) rejects human genetic engineering by moralizing natural reproduction: “a begotten child comes into the world just as its parents once did, and is their equal in dignity and humanity” (p. 100)
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