The birth of the first genetically modified babies raises ethical concerns



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A Chinese scientist claims to have created the first genetically modified babies, an announcement that has caused members of the scientific community to raise serious ethical issues.

A few days ago, the media reported that Chinese scientist He Jiankui had modified the embryos of seven couples.

According to Jiankui, this month, two baby twins would be born. However, no outside sources have confirmed the announcement, the Associated Press said.

Jiankui said his goal was to manipulate the embryos to enable them to resist HIV by disabling the CCR5 gene, allowing the retrovirus to enter the cells.

The researcher says that he used a technology known as CRISPR-Cas9 to edit sections of the human genome and perform the procedure in embryonic humans. The technology, which selectively "cuts" the areas of the genome and replaces it with desired DNA strings, has already been used in adult man and in other species.

The CRISPR-Cas9 technology has only been used to treat life-threatening diseases in adults and few animal experiments have been conducted.

Although some scientists praised the goal of eliminating HIV from Jiankui, others warned that his experiments on humans were risky and unethical.

Dr. Kiran Musunuru, expert in editing human genetic material at the University of Pennsylvania (USA), described the procedure as "an experiment on human beings that is not morally or ethically defensible", according to the Associated Press agency.

Musunuru said that if the procedure successfully deactivated the CCR5 gene, it would leave the person at greater risk for other medical complications such as contracting the West Nile virus and dying of the flu.

Critics also asked if the participating couples fully understood what they were agreeing to and indicated that the Chinese scientist had officially announced his work only long after the start of his work.

Jiankui assures however that he warned participants that the procedure was experimental and involved risks, but that it would provide insurance to the children created with the project. The researcher said that technology can help families and that it is their job to develop it and let society decide what to do with it.

In early 2017, CNA – an English agency of the ACI group – met with John DiCamillo, Ethics Specialist at the National Center for Catholic Bioethics, about the ethics surrounding, in general, the technology CRISPR. He pointed out that Catholics do not need to automatically consider that gene editing is problematic, but "should be alert to the dangers".

DiCamillo said that gene editing can be legally legitimate when it is used "for direct therapeutic purposes for a patient in question and if we are certain to limit the changes to that person". For example, he mentioned gene therapy trials to treat cancer.

However, he assured that the edition of sperm, eggs or early embryos poses serious problems.

Handling sperm and eggs requires extracting them from a person's body; If the design is carried out with these cells, it is almost always by in vitro methods. The Church argues that the practice of in vitro fertilization is ethically unacceptable because it dissociates procreation from the entirely personal context of the marital act.

In addition, for embryo research to be ethical, therapies must be directed to treat and benefit "that particular embryo, not only to gain scientific knowledge or to see what will happen," DiCamillo said.

In addition, he condemned policies that consider the destruction of embryonic human beings as support in the event that research does not proceed as planned, as well as current US policies that require the destruction of human embryos in Canada. as a standard procedure.

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

"There are many things we could do to change the qualities of human beings and make them, in a sense, superhuman, something that would also be an ethical problem on the horizon," he warned.

Because the technology is so new, patients or their descendants can experience a variety of "unintended, perhaps harmful, side effects that can now be inherited later by others," DiCamillo said. An embryo that undergoes genetic modification, such as the ones the Chinese researcher claims to have altered, could also transmit modified genes.

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

Father Tadeusz Pacholczyk, doctor of neuroscience and director of education of the National Catholic Bioethics Center (CNBC), in Filadeldia, had then warned that the experiment was contrary to the dignity of the human person.

"The use of genetic modification technologies in embryos imposes a significant risk on the embryo, simply in terms of the mechanical procedures themselves, the many manipulation steps involved and the risks of possible genetic modifications "far from the goal" that one could reasonably expect, "Pacholzyck added. .

"Permission to investigate genetic modification – continued the expert – will pave the way for greater subjugation of vulnerable embryonic human beings, individuals in the early stages of their lives who will be created in inappropriate, manipulated and abused environments and that they often end up perishing as part of the experiment. "

The priest recalled that "human beings have the right to be brought to the world not in the cold and impersonal world of laboratory glassware, but exclusively in the loving and physical embrace of their parents".

Translated and adapted by Diego López Marina. Originally published in NAC.

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