What do recent advances in molecular genetics have to do with human rights? Quite a lot, it turns out. And key human rights documents have recognized this for some time.
Over the past few years, new “gene editing” tools that are cheaper, easier to use, and more accurate than previous ways to change living organisms’ DNA have rapidly spread to labs around the world. Scenarios that previously seemed far-fetched or far off now confront us, including the prospect of directly controlling the genes and traits that are passed down to future children and generations. Since 2015, a half dozen research teams, in China, the UK, and the United States, have separately reported efforts to modify specific genes in human embryos. These developments have brought us to a critical juncture: human reproductive gene editing now poses a threat to the human rights of future generations.
Gene editing for human reproduction carries huge social risks. It has the potential to threaten the health and autonomy of future generations, to exacerbate existing social disparities, and to lay the basis for a new market-based eugenics that would fuel discrimination and conflict. A debate about whether to risk these outcomes is now raging, though mostly in the publications and meetings of scientific and professional organizations, far away from public view and civil society attention. It is essential that human rights advocates make their voices heard in this debate.
Imagine a world where wealthy parents could purchase genetic enhancements to give their children real or alleged advantages, where children’s futures were thought to be determined by their genes, and where babies were labeled at birth as “good” or “bad” based on their DNA. What would be the implications for human rights, and for the right of children to decide their own futures?
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The rapid pace at which gene editing is developing calls for a response from the human rights community.
Gene editing for human reproduction, also known as human inheritable or germline modification, involves making changes to the DNA of human sperm, eggs, or embryos. It is distinct from efforts to use gene editing as a medical treatment, which target the somatic or non-reproductive cells of existing patients. While somatic gene editing, or “gene therapy,” aims to treat or cure disease in living people, reproductive gene editing is not a medical treatment. It would create a new person with a pre-determined genetic make-up that would be inherited by all of their descendants.
Gene therapy, if it can be made safe, effective, and broadly affordable, will be a welcome addition to modern medicine. Germline gene editing, by contrast, doesn’t treat anyone. It creates future children, and deprives them and future generations of the choice to consent to modifications made to their DNA. And if the goal is to avoid the transmission of inheritable disease, it is unnecessary. Where there is risk of passing on a serious genetic mutation, an existing embryo screening technique (pre-implantation genetic diagnosis or PGD), can in almost all cases eliminate the unwanted gene variant from the family’s lineage. To be sure, embryo screening for PGD raises challenging ethical questions about what conditions are considered “unworthy of life.” But it is far safer and less socially and ethically fraught than manipulating the human germline.
Around twenty years ago, an earlier wave of concern about human germline modification swept through scientific and policy circles, and popular culture. The 1997 dystopian film GATTACA depicted a brutal society that privileged the genetically enhanced over the unenhanced. Similarly, Princeton University molecular biologist Lee Silver made news with his vision of a genetically stratified society, predicting that “the already wide gap between wealthy and poor nations could widen further and further with each generation until all common heritage is gone.”
During the same period, concerns about safety, human rights, and the potential for a high-tech, market-based eugenics prompted more than 40 countries—including nearly every nation with a significant biotech sector—to prohibit the modification of genes passed down to subsequent generations. Several important international human rights instruments also concluded that human germline modification would violate human dignity, a concept at the core of human rights.
One of these, the Council of Europe’s 1997 European Convention on Human Rights and Biomedicine (also known as the Oviedo Convention), is a binding international treaty. Its Article 13 explicitly prohibits interventions “seeking to introduce any modification in the genome of any descendants.”
Another, UNESCO’s 1997 Universal Declaration on the Human Genome and Human Rights, asserts that “the human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity,” concluding in Article 24 that “germ-line interventions” could be “contrary to human dignity.”
In fact, an important motivation for the Universal Declaration of Human Rights was an abhorrence of the eugenic abuses perpetrated by Nazis during World War II. The same logic provides the foundation for the consumer-based eugenics that would result if germline modification were allowed, where people’s life chances would be limited if their unmodified genes were considered from birth to be inferior.
This prospect should make recent attempts to back-pedal on the widespread and longstanding international opposition to human germline modification particularly worrying to human rights advocates. For example, a 2017 report by a committee of the US National Academies of Sciences and Medicine recommended that gene editing for human reproduction be permitted in certain circumstances, leaving open the possibility of expanding those circumstances in the future. But in the real world of commercial pressures and regulatory inadequacy, such limits would simply not hold. If the door to the use of human germline modification is cracked open, it will be impossible to limit its spread and applications.
If the door to the use of human germline modification is cracked open, it will be impossible to limit its spread and applications
At this critical juncture, it’s important to remind ourselves why key human rights documents specifically prohibited these practices, long before they were technically feasible. The medical justifications for human germline modification fall short, and the temptation to “enhance” future generations is profoundly dangerous. Down that road, our scientific achievements would all too likely become not instruments of enlightenment and emancipation, but mechanisms for exacerbating inequality. And our desire to improve the human condition would lead us away from the realization of the human rights that we know are needed for individuals, societies, and humanity to thrive.
The rapid pace of these developments creates an urgent need for the global community—perhaps gathering under UN auspices—to reaffirm existing agreements and clearly prohibit the dangerous and unethical use of reproductive gene-editing.