Claim of creating genetically-edited babies prompts ethics dispute

Washington D.C., Nov 27, 2018 / 03:23 am

A Chinese scientist says he has created the first genetically edited babies, a claim that has led members of the scientific community to raise serious ethical concerns.

Chinese researcher He Jiankui claims that he altered embryos for seven couples, resulting in one twin pregnancy so far. There is no independent confirmation of this claim, the Associated Press noted.

He says his goal was to edit embryos to give them the ability to resist HIV infection, by disabling the CCR5 gene, which allows HIV to enter a cell.

The researcher says he used a technology known as CRISPR to edit sections of the human genome, performing the procedure on embryonic humans. The technology, which selectively "snips" and trims areas of the genome and replaces it with strands of desired DNA, has previously been used on adult humans and other species. CRISPR technology has only recently been used to treat deadly diseases in adults, and limited experiments have been performed on animals.

Scientists have been divided in their response to the claims, with some praising the goal of eliminating HIV and others warning that such human experimentation is risky and unethical.

Dr. Kiran Musunuru, an expert on gene editing at the University of Pennsylvania, called the reported procedure "an experiment on human beings that is not morally or ethically defensible," according to the Associated Press.

Musunuru noted that if the procedure successfully disabled the CCR5 gene, it would leave the individual at increased risk of other medical complications, including contracting West Nile virus and dying from the flu.

Critics have also questioned whether participants fully understood what they were agreeing to, and have noted that He did not give official notice of his work until long after he had begun.  

He, however, said he told participants that the procedure was experimental and carried risks. He said he would provide insurance for the children created through the project. The researcher said he believes the technology can help families, and that it is his duty to develop the technology and then let society decide what to do with it.

Early last year, CNA spoke to John DiCamillo, an ethicist at the National Catholic Bioethics Center, about the ethics surrounding CRISPR technology in general. He stressed that Catholics do not need to automatically consider all gene editing to be problematic, but "need to be attentive to where the dangers are."

Gene editing may be morally legitimate, DiCamillo said, when used for "a directly therapeutic purpose for a particular patient in question, and if we're sure we're going to limit whatever changes to this person." He pointed to gene therapy trials for disorders such as sickle cell disease and cancer that show promise for treating difficult disorders.

Editing sperm, eggs, or early embryos, however, presents serious concerns, he said. Manipulating sperm and ova requires removing them from a person's body; if conception is achieved with these cells, it is nearly always through in vitro methods. This practice of in vitro fertilization is held by the Church to be ethically unacceptable because it dissociates procreation from the integrally personal context of the conjugal act.

In addition, for research on embryos to be ethical, therapies should be ordered to treating and benefitting "that particular embryo, not just for garnering scientific knowledge or seeing what's going to happen," DiCamillo said. He condemned policies that see destruction of embryonic persons as a back-up if research does not go as planned, as well as current U.S. policies that require destruction of human embryos as standard procedure.

Another potential problem is editing genes for non-medical reasons, for example to enhance vision or intelligence.

"There's any number of things that we could do to change the qualities of human beings themselves and make them, in a sense, super-humans … this is something that would also be an ethical problem on the horizon," he warned.

Since the technology is so new, patients or their descendants could experience a range of "unintended, perhaps harmful, side effects that can now be transmitted, inherited by other individuals down the line," DiCamillo said. An embryo who experiences gene modification – such as those the Chinese researcher He claims to have altered – could also carry and pass on edited genes.

Last summer, researchers in Oregon announced that they had successfully altered genes in a human embryo for the first time in the United States.

Fr. Tadeusz Pacholczyk, director of education for the National Catholic Bioethics Center, warned at the time that the experiment was contrary to the dignity of the human person.

"Very young humans have been created in vitro and treated not as ends, but as mere means or research fodder to achieve particular investigative goals," he said.