This student story was published as part of the 2025 NASW Perlman Virtual Mentoring Program organized by the NASW Education Committee, providing science journalism experience for undergraduate and graduate students.
Story by Daniela Danilova
Mentored and edited by Kate Greenberg
It’s been 10 years since CRISPR made a splash as Science’s 2015 “Breakthrough of the Year.” As the announcement noted, “For better or for worse, we all now live in CRISPR’s world.” Universal, precise, and inexpensive, it checked all the coveted boxes for a genome editor. While international discussions have since addressed theoretical applications for germline gene editing, there is still no global consensus on how, or even if, it should be used as a medical therapy. This open ethical question has been exploited by rogue actors eager to provide an answer in defiance of legal boundaries, but a definite moral stance on the global stage could help prevent further risky experiments framed as virtuous progress.
Weeks before Science’s announcement, Nobel laureate David Baltimore spoke at the First International Summit on Human Genome Editing: “We could be on the cusp of a new era in human history. Today, we sense that we are close to being able to alter human heredity … How, if at all, do we as a society want to use this capability?”
There is great excitement for using CRISPR in somatic DNA editing to treat disease. Somatic editing consists of non-heritable changes made to the DNA of body cells, meaning they cannot be passed from generation to generation. By contrast, the future of germline editing in medicine is murky. Germline editing alters reproductive cells or embryo DNA to make the edits heritable, extending to generations beyond the person receiving the treatment.
From eliminating disease-causing genes to enhancing desirable traits, experts at the summit jumped to germline technology’s clinical potential. Yet for a treatment with generational consequences, little was said about how such implications would change how we practice medicine today.
Leaders in the field acknowledged that clinical application of germline editing would be unwise without “broader societal consensus,” but they offered no plausible benchmarks, broadly concluding that “[t]he international community should strive to establish norms concerning acceptable uses of human germline editing … to discourage unacceptable activities while advancing human health and welfare.” This ambiguity created an opening for outliers to set an example.
The first surfaced in 2018, when Chinese scientist Dr. Jiankui He went mainstream at the second summit. He confirmed his team used CRISPR to impair CCR5, a gene related to the HIV infection process, leading to the birth of twin girls.
At the time, research on human embryo editing for reproduction was banned in China, and legal consequences followed — He and his accomplices were sentenced to three years in prison for forging ethics documents and misleading doctors into implanting the edited embryos.
He did not see the law as a respectable deterrent. In his leaked announcement video, he explained, "I understand my work may be controversial — but I believe families need this technology, and I’m willing to take the criticism for them.” He appealed to the public’s imagination: “As humans we are always conservative. We are always worried about new things, and it takes time for people to accept new technology … I would say in 50 years, like in 2074, embryo gene editing will be as common as IVF babies to prevent all the genetic diseases we know today.” He saw his actions as a necessary step to prepare for the inevitable future.
The scientists were reprimanded for having “crossed the bottom line of ethics in scientific research.” But this line had never been explicitly drawn. Baltimore denounced the situation as “a failure of self-regulation by the scientific community.”
Thankfully, normative questions are finally reaching the forefront. The third summit in 2023 saw the first explicit inquiry into the societal implications of legal germline editing: “If safe heritable human genome editing is achieved, will more permissive public opinions and policies … follow?”
A new bottom line of ethics for germline editing remains ready to be set by the next scientist in pursuit of a headline, but research is not a solo sport. While the third summit continued to emphasize a general timeline, the most recent summit, held in Cambridge, Mass., in May, led to more concrete steps.
At its conclusion, The Global Observatory for Genome Editing issued a call to develop a “Charter on Emerging Technologies and Human Dignity” and outlined four principles to guide its development. Now, the scientific community must move beyond hypothetical discussions and come together to explicitly define ethical boundaries.
Top image: Germline genome editing introduces changes to the DNA that will be passed down to offspring. Credit: Unsplash / Creator: Sangharsh Lohakare. *
Daniela Danilova
The NASW Perlman Virtual Mentoring program is named for longtime science writer and past NASW President David Perlman. Dave, who died in 2020 at the age of 101 only three years after his retirement from the San Francisco Chronicle, was a mentor to countless members of the science writing community and always made time for kind and supportive words, especially for early career writers.
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