Three years ago, scientists, social scientists and ethicists gathered in Washington at the National Academy of Sciences for the first international summit on human gene editing, to discuss scientific, social and ethical issues surrounding human applications of this powerful new tool. One result of the meeting was a call for a voluntary international moratorium on reproductive applications of genome editing until there was “broad societal consensus” about when making such heritable modifications is ethically acceptable.
Nothing remotely like a consensus has been reached, yet the research races ahead. Numerous labs are editing human embryos (though the researchers have not transferred the embryos into a woman’s womb, as the Chinese group claims to have done). In one high-profile paper in Nature, Shoukhrat Mitalipov, a U.S.-based scientist, described creating roughly 100 human embryos carrying a disease-causing gene to see whether he could “repair” them.
That experiment was not covered by the moratorium, because it was “basic” research — it focused not on producing a baby via transfer to a woman’s womb but on developing the laboratory techniques that reveal the potential of genetic modification. (In accordance with existing guidelines, the altered embryos were destroyed.)
Yet it made clear the professional rewards that can accrue to scientists who push the envelope by doing provocative work that earns them celebrity — and a piece of potentially commercially valuable reproductive technology.
In short, it is too easy to condemn the single experiment while letting the rest of the international scientific community off the hook.
The Chinese scientist was responding to an imperative that permeates international science: Do research that gives you a “famous first.” In moving from laboratory to reproductive clinic, the Chinese team took a step already contemplated in the work of their more internationally visible peers.
To be sure, it was a highly irresponsible step — an unnecessary and medically pointless experiment conducted upon two unwilling and unconsenting human lives. (There are far less risky ways to avoid HIV infection.) The widespread condemnation by ethics experts was warranted, yet we ought to also scrutinize the international scientific context in which it took place.
The Chinese bombshell is only the latest human reproductive innovation in which the promise of large consumer demand was enough to persuade specialists to embark on ever more ambitious projects that raced ahead of ethical considerations. In the case of in vitro fertilization, for instance, it took Britain six years from the birth of the first IVF baby, in 1978, to enact rules for how to deal with spare embryos. Technologies such as IVF and prenatal genetic diagnosis have inspired unanticipated behaviors and effects — including the creation of babies for whom no one claimed parenthood and unregulated international markets in human eggs and surrogate wombs.
In this week’s case, the benefits are at best hypothetical, whereas the risks are high — and partly unknowable. And the risks extend not only to the health and safety of the children but also to the integrity of the social relationships in which they are embedded — parent to child, medicine to patient, state to citizens and society to its members.
By the scientists’ own admission, the genetic intervention was made not primarily to treat or even prevent disease, since these children were not infected with (or even at any unusually high risk of contracting) HIV/AIDS. Rather, it was to “treat” a social disorder — stigma and discrimination in China against people living with that disease. The father of the twins is infected with HIV and, according to the researchers, hoped to ensure his children would never face the same medical and social burden.
We do not need a new Aldous Huxley to remind us that creating a genetic fix to a social problem opens a doorway to a potentially terrible new world. It’s not hard to imagine features of human diversity that people might wish to modify in the name of giving their children a better life. In the United States, having dark skin correlates with higher risk of entanglement with law enforcement, with potentially dire lifetime consequences. Some parents might feel pressure to genetically alter the skin tone of their children. Far from fixing the social problems of an unequal world, this could well lead to new lines of discrimination between the genetically “perfected” and those left behind.
What, then, should we take away from this profoundly troubling news?
First, we badly need more-explicit and more-effective rules governing research into genetic editing. It should be a given that when a norm has been violated or a rule broken, that doesn’t mean it’s open season for anyone who cares to follow suit. The researchers’ transgression makes it all the more urgent to affirm and codify international principles for protecting human dignity.
Second, we need more than a moratorium that controls when germline editing moves into reproductive medicine, but a process of genuine deliberation on whether it should move in this direction. Remarkably, the leadership of the Second International Summit on Genome Editing, held this week in Hong Kong, abandoned the earlier requirement for broad societal consensus before moving onto clinical applications. Its call for “translational” research designed to facilitate clinical application presumes a broad consensus on the aims of application. We believe such a consensus has not yet been reached.
Third, we should be skeptical of the claim that the ethical stakes are significantly lower in basic research than in applied research. Transferring an edited embryo into a woman’s womb is unquestionably a major, consequential step. Yet the capacity to undertake such implantation would not exist if the basic-science community had not already developed the tools and techniques that enable that step to be taken. The research projects undertaken in those pure-science laboratories, rewarded by publication in high-prestige journals, shape which applications become possible and available.
Finally, because of the momentum created by this basic research, we desperately need to support a more inclusive public debate about biotechnology and the human future. That discussion cannot and must not be left to scientists and ethicists who give basic research a pass — waiting only for the controversial (and inevitable) applications. And we should invite social scientists, politicians, patients and ordinary citizens into the debate, and the conversation must be global.
The deliberations undertaken at the Hong Kong summit were worthy and important. Yet they were organized by the self-interested few who are pushing forward the frontiers of science, not by those whose task it is to reflect on questions of the public good, let alone by people whose lives will be affected by policies articulated here.
CRISPR in general and the Chinese experiment in particular raise questions about humanity in the most basic sense — about our human identity, integrity and dignity. These matters cannot be reduced to narrow questions about the risks and benefits of particular technological interventions, nor should they be treated as abstract moral issues to be settled by philosophers. They are about the familiar yet mysterious fabric of our lives and relationships, including the ways we relate to, care for and guide our children.
The seductive promise of engineering better genes for one’s children — as if we were downloading wellness apps to a smartphone — denigrates that child and devalues the richness of humanity itself. The Chinese experiment reveals just how alluring these new technologies have become. It also reveals how overdue we are for a thorough conversation about the futures we want to embrace — and the futures we find abhorrent.