Examining the ethics of gene-edited babies

Dr. He Jiankui of China shocked the globe on Nov. 28, 2018, when he announced the birth of the world’s first gene-edited twin girls. The biophysicist claims to have used a technology known as CRISPR (pronounced “crisper”), which stands for Clustered Regularly Interspaced Short Palindromic Repeats, to edit sections of the human genome, performing the procedure on embryonic humans. The technology selectively “snips” and trims areas of the genome and replaces it with strands of desired DNA.

“My first thought was that the brand of secular ethics that currently reigns among scientists is inadequate to the task of properly informing their decisions about the kinds of science that should or should not be pursued,” stated Fr. Tad Pacholczyk, Ph.D., when he first heard the news. “Editing our embryonic children requires numerous embryos to be simultaneously created (or thawed out), treated as ‘products’ and subjected to genetic ‘treatments,’ with many of them perishing during the experiment, in order that a few of them might survive and develop. Editing our embryonic children may also involve risks to them that we will only understand later when they grow up. Is it ever proper to experiment on our own offspring? Moreover, gene editing in embryos introduces changes that will be passed into the human gene pool, establishing permanent and irrevocable changes to our own humanity. How does one adequately evaluate the risks of such changes?”

Father Pacholczyk earned his doctorate in neuroscience from Yale and did post-doctoral work at Harvard and is now one of the leading experts in the bioethics field, serving as a member of the National Catholic Bioethics Center (NCBC) in the United States and professor of bioethics at the University of Mary in Bismarck.

Father Pacholczyk will be discussing the ethics surrounding human embryo experimentation and be one of the many world-renowned bioethics experts presenting at a two-day seminar at the University of Mary, in partnership with NCBC, Friday and Saturday, August 9-10, in the Lumen Vitae University Center’s Lower Level Conference Center. The event, which is open to the public, brings together authorities in the field of bioethics and answers questions regarding other current topics including end of life decision-making, new developments in the biosciences and bioethics, infertility and in vitro fertilization, ethical approaches to pre- and post-natal complications, to name just a few.

Father Pacholczyk believes scientists can’t continue to hide behind the veil of “good intentions,” but must instead begin to examine the broader ethical ramifications of their research and clinical activities.

“Dr. He drew a parallel between in vitro fertilization (IVF) and human embryo gene editing—he calls it ‘gene surgery.’ In his YouTube video, Dr. He says, ‘Look back to the 1970s with Louise Brown. The same fears and criticisms then are repeated now. Yet, IVF unquestionably has benefited families. There will be no question about the morality of gene surgery in 20 to 30 years.’ If we conclude that IVF is something good and ethically acceptable, we end up granting the principle that is OK to engage in very harmful and damaging actions as long as we have a good end or purpose in mind,” Fr. Pacholczyk explained. “Although IVF involves a litany of grave harms, like the engendering of human beings in laboratories and the freezing or destruction of embryos, if our intention is to help others fulfill their desire to have a baby, it must be OK. By this same logic, gene editing of our children will also come to be acceptable as long as our intentions are good and we’re trying to help others, even if we are actually causing serious harms along the way.”

Dr. He said 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. However, according to Nature, an international journal of science, Dr. He “might have inadvertently caused mutations in other parts of the genome, which could have unpredictable health consequences. Also, CCR5 is thought to help people fight off the effects of various other infections, such as West Nile virus. If the gene is disabled, the girls could be vulnerable. If they do suffer in a way that is linked to He’s procedure, and He is found to have been practicing medicine illegally, he could be sentenced to between three and 10 years in prison. But identifying those health effects could take years.”

Since He’s announcement, his revelation has set off a massive firestorm around the world and even in China. Condemnation from Chinese bioethicists and American scientists quickly followed. Recently, a letter was drafted by prominent scientists and ethicists and sent to Health and Human Services (HHS) noting that Dr. He had ignored important ethical guidelines and urging a moratorium on federal funding in the United States of experiments that genetically alter humans.

Father Pacholczyk believes the letter, while raising legitimate concerns, doesn’t go far enough in identifying the root ethical issues of the problem.

“Most of the people who signed the recent letter to HHS calling for a moratorium do not see the grave problems with IVF,” said Fr. Pacholczyk. “So in time, they will accede to the gene editing juggernaut. Their letter lacks the kind of principled ethical foundation needed to properly confront the issue.”

People interested in the two-day bioethics seminar or would like to register for the event online can do so at www.umary.edu/bioethics. People wanting to learn more about the University of Mary bioethics program should contact the Director of Bioethics, Dr. Karen Rohr, at [email protected] or 701-355-8113.