Fifteen Eighty Four

A PROMISE THAT IS AT ONCE A CHALLENGE

Gene editing offers great promise to reduce human misery and facilitate human health: to combat virus infectious diseases; to correct monogenic disorders in pluripotent cells; to program cells for regenerative medicine and cancer immunotherapy; to prevent parents’ transmitting serious genetic diseases to offspring; to correct mutations in patient cells; to screen for causative mutations; and to identify rare genetic disorders. Gene editing can directly target the cause of a disease, permanently eradicate it, and prevent a broad range of incurable inborn maladies. It can do so with edits that can be passed on to future generations.

But while some forms manipulation may eliminate some genes that cause some diseases, the idea of rendering the biology of our species fungible to human design makes us uneasy. Might it change our human nature? Could it undermine human dignity? Would it violate human rights? It could involve difficult tradeoffs. Could genetic manipulation emancipate humanity from genetic disease —— or would it render persons captives of others’ preferences? Should parents have a right to determine the “best” genetic inheritance for their future children —— or should a future person have a right to be free of genetic alteration? Could the expectable diversity of parental preferences lead to collective action problems, negative externalities, and network effects? Will it exacerbate existing social and economic inequalities?

A COMMON BUT MISGUIDED RESPONSE

In answering such questions, many analysts are guided by genetic essentialism, the idea that evolved organisms have essences that are inherent, permanent, and vulnerable to violation. It rejects the engineering of traits that are otherwise unusual in humans; that would widen the distribution of an already existing trait; or that would bring to expression traits not present in species. Genetic essentialism is also motivated by the notion of preserving the “genetic integrity of the human species.” Whereas all genomes change naturally, genetic essentialism takes a snapshot of the human genome at its current stage of evolution and insists that this current stage is permanent. No genome is; humankind was genetically different in the past and it will be genetically different in the future. Species change naturally through spontaneous genetic mutations. Indeed, a species can endure only if it adapts to its changing environments. The human species also changes culturally. Precisely its morally relevant capacities are cultural, not natural.

MY ALTERNATIVE

I propose an alternative to essentialist approaches: a political understanding of human nature compatible with a wholly naturalistic understanding of human species. By naturalism I refer to the view that only natural laws and forces operate in the universe —— and that they allow for a human species capable of culture. Indeed, genetic regulation is itself a culturalcreation, as are possible moral norms to evaluate genetic engineering, and legal rules to regulate it.

POLITICAL BIOETHICS

I call my alternative “political bioethics.” It seeks to generate shared answers to questions posed by human genetic engineering, toward its legal and social regulation. It has a greater purchase across cultural divides and thus a greater capacity than its competitors to generate agreement on regulating engineering because it  bases itself on a naturalistic understanding of the world: it entertains only those normative claims that do not violate a natural scientific understanding of reality. Such an understanding is not as deeply embedded in particular ways of life and culture as most philosophies and theologies to which many people adhere. Purchase across cultural divides is all the more important for the regulating human genetic edition internationally.

While this naturalistic approach operates with biological data, a politically useful notion of human nature cannot be reduced to them. Indeed, human biology yields no notion of human nature rich enough for regulatory purposes; no science entails moral guidelines for human behavior. So political bioethics provides various means for communities to construct the needed guidelines. Political bioethics understands human nature itself as a social construct. That is, a culture constructs its morally relevant capacities by constructing a notion of human nature.

GENERAL PRINCIPLES TO GUIDE REGULATION

Political bioethics would guide possible future regulation in four ways.

First, it answers such questions as: By what norms do we members of a particular political community wish to be governed? What kind of moral beings should we aspire to become? Might we construct the human nature we have reason to prefer, by constructing the human rights we have reason to demand? (Here I build on earlier work: https://www.cambridge.org/core/books/human-rights-as-social-construction/E8B49E3DC91F5243EF29210E43583527)

Second, it emphasizes the human capacity forcritical self-reflection.

Third, this capacity is one of many examples of the entwinement of our evolved, biologically based cognition and human-made culture. For example: while humans possess the genetic makeup and physiology necessary for language creation and use, any given language is a particular cultural expression. Political bioethics views human nature itself as the dynamic co-evolution of human biology and human culture. That is, organisms are constructed in development; they are not “programmed” to develop by genes; and they co-construct and co-evolve with their environments, changing both in the process. Human ecosystems are products of complex interactions between genes and environments, natural and man-made. Cultural patterns contain more information than genetic patterns about what it is to be human. Notions of human nature found across time and across cultures are learned in particular cultures. Human nature is more a matter of culture than nature —— and culture constructs. Not surprisingly, human diversity is much more a cultural than a biological phenomenon. Human groups display little genetic diversity but very great cultural diversity. Indeed, cultural diversity is one source of the difficulty to find broad social agreement about possible norms to regulate human genetic engineering.

Fourth, humankind accomplishes most of its tasks through cultural learning. The largest part of human adaptation is cultural, and cultural adaptation occurs much more quickly than biological adaptation.

EXAMPLE OF POLITICAL BIOETHICS DEPLOYED: DECISIONAL AUTONOMY

Decisional autonomy as a regulatory principle —— the individual autonomy possible when a person decides for herself —— is one guide, among others, for deploying political bioethics. This perspective rests on two propositions.

First, approximately 80% of rare, often incurable conditions affect newborns and children. Roughly half of all rare diseases have a childhood-onset. Concern for their welfare may urge genetic intervention in some cases. That concern facilitates the child’s best interests if it leads to her highest possible quality of biological life. That concern is held by the present generation, of course, and not the future child itself. At the point of genetic manipulation of an embryo, the decisional autonomy of the future person who will develop from that embryo can only be anticipatory. Her decisional autonomy is held in trust by the generation that performs the manipulation, guided by a notion of her best interest. By analogy to principle of the child’s best interests, political bioethics limits germline editing to forms that promote the future person’s physical and cognitive welfare in a therapeutic sense. Preventing serious genetic disease is core to welfare.

Second, a future person’s interest in her decisional autonomy may justify genetic therapy where the embryo indicates severe disability. On the one hand, while such intervention is benevolent, benevolence is unavoidably paternalistic when directed at life that cannot participate: a human embryo. On the other hand, only when the future person becomes a current person is decisional autonomy present. At that point, she can only respond to her having been genetically modified as a fait accompli, with no means to reverse it. The embryo is not itself a person but a moral placeholder for the future person; it cannot veto the planned manipulation from which the future person will develop. So only the present generation can defend a future person’s interest in her own decisional autonomy. It does so by intervening in an embryo that carries a seriously debilitating genetic disease.

THE INTEREST OF FUTURE PERSONS IN BEING GENETICALLY ENGINEERED

Genetic manipulation is justified only if the planned genetic modification serves the future person’s interests. For example, avoiding a genetically based incapacity for decisional autonomy makes a paternalistic decision by others acceptable because it preserves the future person’s decisional autonomy and thus its capacity to be free of paternalism in the future. This claim has four supports.

First, the embryo cannot be identical with the future person because a future person is also a product of environments, experiences, and socialization in specific times, cultures, and circumstances. The relationship between present and future persons is neither symmetrical nor reciprocal. But this fact does not preclude the possibility of future persons as rights-bearers.

Second, a person can have a legitimate interest even if she is not able to realize that interest —— namely, as an embryo, in other words, a future person. Correspondingly, she can bear a right to preserve her interest in decisional autonomy.

Third, an embryo cannot bear rights because it is not a person. But it can be a place-holder for some of the rights of the future person it will become. Current persons can respect the rights of the future person by treating the embryo in ways that respect the future person’s rights.

Fourth, a future person’s capacity as a rights-bearer rests on a community of current persons understanding themselves as members of a transgenerational moral community. The standpoint of the current person need not be identical with that of the future person to conceive of her interest in her decisional autonomy.

A RIGHT OF A FUTURE PERSON TO BE FREE OF GENETIC EDITING?

Respect for human dignity entails engineering the genome to decrease the possibility of preventable genetic disease in future individuals, for example toward allowing for politically critical capacities such as individual decisional autonomy. A notion of dignity based on a future individual’s interests and welfare entails the current generation’s responsibility or moral obligation in this sense. The future person’s interest is to be free of disease. But recognition of human dignity does not entail a right of the future person to be free from genetic modification. While the future person cannot consent to genetic engineering or to any of its anticipated benefits, present persons may reasonably interpret the future person’s best interest as freedom from genetic disease. Doing so is how we, today, meet our responsibility for future persons.