Ethical concerns raised as human embryonic gene editing continues in US

New York City, N.Y., Feb 1, 2019 / 16:01 pm

A scientist at Columbia University in New York is conducting controversial gene-editing experiments on human embryos, according to a recent report from NPR.

Dieter Egli, a developmental biologist, is experimenting with CRISPR technology to edit genes in order to prevent certain hereditary genetic diseases and mutations, such as blindness or cystic fibrosis.

In his lab, Egli uses human ova and sperm, along with the CRISPR tool, to create genetically edited embryos. He told NPR that the human embryos that he creates and edits are not allowed to develop beyond a day.

This kind of research is currently banned from receiving federal funding, but can be conducted using private funding. The Food and Drug Administration prohibits gene modification on viable human embryos, which means any genetically modified human embryos must be destroyed, rather than brought to term.

While Egli said that he wants to use the research to prevent diseases, some scientists worry about the ethical implications of such research if it were used haphazardly.

Already in China, a scientist has been condemned both by his university and by civil authorities for creating genetically modified babies, using CRISPR, for seven couples. Researcher He Jiankui claimed in November that these embryos had already resulted in the birth of a set of genetically modified twins, though there has been no independent confirmation of his claim.

In a letter signed by 120 Chinese scientists, He was condemned for ignoring ethical guidelines. The letter called the gene manipulation a "Pandora's box," and said "The biomedical ethics review for this so-called research exists in name only. Conducting direct human experiments can only be described as crazy."

Fyodor Urnov, associate director of the Altius Institute for Biomedical Sciences in Seattle, told NPR that he found it "really disturbing" that gene-editing research was continuing in the United States.

"As we've learned from the events in China, it is no longer a hypothetical that somebody will just go ahead and go rogue and do something dangerous, reckless, unethical," Urnov says.

One of the biggest ethical concerns of the medical community regarding gene editing is that it could lead to the creation of "designer babies" and a society in which genetically modified people are seen as superior to genetically unedited people.

"Anyone with a connection to the Internet will be able to download the recipe to make a designer baby," Urnov says. "And then the question becomes: 'What's to prevent them from using it?' As we learned in the past year: apparently nothing."

Catholic bioethicists have previously raised serious concerns about gene-editing research and technology.

Fr. Tadeusz Pacholczyk, Director of Education for The National Catholic Bioethics Center, told CNA in 2017 that embryonic gene editing is morally objectionable because it treats "very young humans...not as ends, but as mere means or research fodder to achieve particular investigative goals."

At the time, he was responding to news that a team of scientists at Oregon Health and Science University had used CRISPR to edit the genes of human embryos. While gene editing may have laudable goals, such as preventing diseases, the means of killing human embryos cannot justify those intrinsically evil ends, he said.

"Their value as human beings is profoundly denigrated every time they are created, experimented upon, and then killed. Moreover, if such embryos were to grow up, as will doubtless occur in the future, there are likely to be unintended effects from modifying their genes," Fr. Pacholczyk added.

While gene editing research is beginning to be explored and discussed in various countries throughout the world, most places have urged extreme caution and have laws in place that thus far prohibit genetically edited pregnancies.

Urnov told NPR that the research should be stopped until every ethical dilemma can be addressed.

"We need to hit the pause button and keep it pressed until we understand how do we proceed in a way that minimizes the risk of people going rogue," Urnov says.

J. Benjamin Hurlbut, an associate professor of biology and society at Arizona State University, told NPR that he would also urge extreme caution for gene editing technologies.

"If we've learned anything from what's happened in China, it's that the urge to race ahead pushes science to shoot first and ask questions later," he told NPR. "But this is a domain where we should be asking questions first. And maybe never shooting. What's the rush?"