NIH Director explores the ethics of gene editing technology

By JAE CHOI and JOHN FRYE | February 14, 2019

Dr. Francis Collins, director of the National Institutes of Health (NIH), discussed the medical and ethical implications of modern biomedical research as part of the Milton S. Eisenhower (MSE) Symposium on Tuesday. Collins focused on recent scientific advances in gene-editing technologies that could open up the possibility for therapeutic treatments that operate at the level of patients’ genomes.

Collins stated that he was part of a research team that contributed to the Human Genome Project, a nearly decade-long endeavor to functionally and physically characterize all the genes coded within the human genome. The NIH spearheaded the Human Genome Project and completed it in April 2003. Collins continues to conduct research in genetics and gene-editing therapies at the NIH.

For Collins, the Human Genome Project and other well-publicized scientific advances, like the discovery of CRISPR-Cas9 technologies that can be used for gene-editing therapies, have made way for exciting new avenues in treating human disease. Collins cited clinical trials for sickle cell disease (SCD), a genetic mutation of cells in the bone marrow, as one example of how gene-editing technologies can positively impact human health.

However, he noted that although these advances are exciting, they come with potentially harmful consequences.

“It is both scientifically exhilarating and, ethically, it has some challenges,” he said.

Collins went on to discuss ways in which the discovery of CRISPR-Cas9 has not only generated discussions on the ethics of editing a person’s genome but has also already led to the application of the technology on human embryos.

“People were wondering about this CRISPR thing, if we’re going to start modifying human genomes, are we going to do it ethically? Could you actually create designer babies? That’s no longer hypothetical, it has been done on at least one pair of twins by a researcher in China,” Collins said.

Last fall, a Chinese scientist claimed to have impregnated a woman with gene-edited embryos. He said that the twin girls who were born as a result wouldn’t be able to contract HIV. He presented his findings at the Second International Summit on Human Genome Editing, sparking widespread controversy.

Collins stressed that working through the ethics of applying gene-editing technologies to embryos and germ cells (eggs and sperm) will be essential before putting them into practice. 

“We’ve got some time to think about this,“ he said. “We need more of a consensus on a responsible patent. I’m going to advocate that in the meantime we avoid making statements about the conditions under which [gene-editing] would be possible.”

Collins hopes that the application of these technologies will be beneficial in the treatment of disease. 

He further discussed ways in which biomedical research could be improved. He said that new technologies should be made available to all people regardless of economic background and should be made available worldwide. 

Indira Rayala, the marketing director for MSE, saw the opportunity to invite Collins for a talk as a chance to tap into an important cultural moment.

“Every year, MSE wants to do a varied symposium to hit different aspects and take interest from a huge variety of people. Of course, science has been in the forefront of the news this year and in past years. There’s been a lot of controversy about science and the application of science. We thought the NIH director, who is the head of scientific research in the U.S., would be a great person for that,” she said. 

Usman Enam, a junior who attended the event, agreed with Collins’ conclusions on the necessity of a thorough ethical investigation into some of the applications of gene-editing technologies.

“The whole point of his talk was that he didn’t really have a stance except that we need to work more on it and figure it out. I totally agree with that,“ Enam said. “Ethics are just so hard to figure out. We just need a five-year moratorium where we can figure it out instead of just going for it.”

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