Heritable Human Genome Editing

The Gender Justice and Disability Rights Coalition on Heritable Genome Editing addresses—for the first time—the immense risks of heritable interventions in the human germline - that is, the modification of the DNA of embryos or germ cells in order to create so-called designer babies. It also examines the technology from a feminist and anti-eugenic perspective.

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Five years ago, a scientist "created" the first CRISPR babies. Although his dangerous experiment was condemned worldwide, a small circle of leading scientists continues to push for heritable genome editing research and testing in clinical trials - including in Germany. It is therefore important to decide now whether further development of this technology will benefit humanity or harm it.

Many high-ranking institutions have already published policy papers and recommendations. However, these usually focus on technical safety, while the major risk to society—such as increased discrimination against people with disabilities and other minority groups—is neglected. The unequal distribution of risk from clinical trials, which women and pregnant people in particular would bear, as well as the children created in this way and their offspring, is also rarely addressed.

In the new paper, the 16 authors from science, civil society, and academia define the prerequisites for a just and inclusive society. "On this basis, we come to the conclusion that germline interventions cannot be reconciled with feminist, anti-eugenic and human rights principles," summarizes Dr. Isabelle Bartram from the Gen-ethisches Netzwerk (Gen-ethical network) in Berlin, an organizational member of the international coalition.

More than 70 individuals and organizations from science, civil society and scholarly institutions support the principles. It is available in German, English and Spanish and provides important impetus for the socio-political debate about genome editing in humans. "In Germany, hereditary interventions in the human germline are still prohibited by the Embryo Protection Act, but we can already see from reproductive tourism that international regulation of controversial technologies such as egg “donation” and surrogacy is necessary to prevent unethical practices in countries with loose regulations," says Bartram.

"We want political decision-makers and the public to know that hereditary genome editing is not a niche issue, but that a lot is at stake for society," says Bartram. Taking the social impacts into account is just as important as the discussion about safety or ethics.