Dr. Katherine Drabiak publishes two papers on genome editing

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Genome editing of human embryos—or making changes to cells to alter a person’s DNA—is portrayed as a way to prevent inheritable genetic diseases and better ensure the birth of healthy babies. And who doesn’t want that?

But, according to the USF College of Public Health’s (COPH) Dr. Katherine Drabiak, an attorney and an assistant professor who specializes in bioethics and medical ethics, the enthusiasm for genome editing has to be tempered with the social justice and human rights implications it can potentially pose.

Drabiak has recently published two papers exploring the ethics of human genome editing. She was a co-author along with other ethicists, humanities scholars, social scientists and policy experts of the “Geneva Statement on Heritable Human Genome Editing: The Need for Course Correction,” published in December in the journal Trends in Biotechnology. The paper was written after the group met in 2019 in Switzerland to discuss the issue of genome editing and the importance of engaging the public in its discourse. She also authored a paper titled, “The Nuffield Council’s Green Light for Genome Editing Human Embryos Defies Fundamental Human Rights Law,” published in January in the journal Bioethics.

According to Drabiak, both scientists and policymakers argue that human germline modifications in embryos can be ethically permissible when the procedures appear “reasonably safe” and have “positive value.” But Drabiak and other like-minded thinkers are calling for more contemplation and examination before giving genome editing a societal green light. In the Geneva Statement paper, she and her co-authors write, “They [gene-editing proponents] have taken it as their task to decide how we might proceed toward altering the genes of future children and generations. In fact, the question at hand is whether to proceed at all.”

Katherine Drabiak authors two papers on genome editing and its human rights’ implications. (Photo by Anna Mayor)

“Any time there is technology that can be used for medical intervention, I think people should stop and consider the implications,” explained Drabiak. “What’s the evidence that these technologies work? How predictable are the effects on long-term development? Do parents have a right to design their future children? And what will all of this mean for our society? Pushing the pause button was my goal in publishing these papers.”

In the published papers Drabiak and her colleagues point out that human gene editing will not treat or prevent disease in any existing person. As such, it has the potential to be considered less a medical intervention and more a way to satisfy parental desires for children with certain genetic traits. It could also produce unanticipated health effects and—because it requires the use of in vitro fertilization—put a health burden on women.

“There’s been a lot of distortion of the language of what the technology can do,” said Drabiak. “The technology basically creates genetically modified people who wouldn’t otherwise be found in nature. But does tampering with a genome constitute a violation of fundamental human rights? Does an embryo have a right to inherit unhampered genomes? Some scientists think we should move this technology forward, that it would be irresponsible not to. But these technologies exist within a social fabric and we need to talk about all the implications as a society. We need to deliberate together and discuss what’s at stake, not just from a scientific and medical standpoint, but from a human rights one as well.”

Story by Donna Campisano, USF College of Public Health