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CMDA's The Point

Actually Making Better Human Beings

September 12, 2019
09122019POINTBLOG2

by David Prentice, PhD

“I mean, if we could make better human beings by knowing how to add genes, why shouldn’t we do it?” – Nobel Laureate James Watson, 1998

There continues to be a push to “make better human beings” using genetic modifying technologies. This includes the use of gene editing enzyme tools such as the much talked about CRISPR-Cas system, as well as large scale heritable genetic technologies such as creation of three-parent embryos. As discussed previously, one aspect of gene editing has a very positive aspect: actually attempting to treat patients with genetic conditions and other maladies. Those clinical trials include potential treatments for cancers, sickle cell disease and even the first in-body gene editing to treat blindness. These are truly therapeutic trials, attempting to alleviate diseases in affected patients.

But others want to follow Watson’s phrase and use genetic technologies to manufacture new human beings, making heritable changes in early human embryos. Proponents of the falsely labeled “mitochondrial replacement therapy” claim it will safely prevent mitochondrial genetic diseases, and they have launched a fight to remove prohibitions on the manufacture and gestation of “three-parent embryos,” but the truth is this genetic technology is neither safe nor proven effective. It creates new, supposedly better, human beings, using nuclear transfer (cloning) technology, without treating those who have the mitochondrial genetic problem. Moreover, alternatives exist that are potentially therapeutic without making heritable genetic changes.

Near the end of 2018, a Chinese scientist announced he had created and birthed gene-edited twin girls whose genomes were supposedly altered to prevent HIV infection. But it turns out the patently unethical study, in which the twins ARE the experiment, failed on many levels. Only one of the twins actually had both alleles edited and may be resistant to HIV, while the other twin is still susceptible. And the genetic change actually makes the girls more susceptible to influenza and West Nile virus, may negatively affect their cognition and likely shortens their lifespan.

The announcement led to an outcry from the scientific community, although there is some question as to whether the outrage was genuinely due to the questionable ethics of heritable gene editing or just the timing of moving ahead with human gene editing experiments and the potential fame associated with being the first to successfully birth gene-edited babies. Some members of the National Academy of Sciences called the experiment “premature” and a “misstep” but did not strongly condemn the embryo-editing experiments.

Nonetheless, numerous scientists have published calls for a temporary moratorium in an attempt to regulate human genetic engineering experiments. Unfortunately, the various proposed moratoriums would only prohibit gestation and birth of gene-edited embryos, while continuing to allow, and even encourage, experiments that create and destroy human embryos to perfect the genetic modification techniques. The National Academies and the Royal Society have formed an international commission “to develop a framework for scientists, clinicians, and regulatory authorities to consider when assessing potential clinical applications of human germline genome editing.” In other words, they are working on making human germline genetic engineering acceptable. Put another way, they are not asking the question “should we do it” but only planning the “how can we do it” path forward. Indeed, the Chinese scientist, Dr. He, justified his own human embryo gene editing experiments by saying he had followed the guidance of the National Academy of Sciences. It is certainly telling that in their first day-long meeting, the international commission only allotted 30 minutes for public comment, preferring instead to focus on their own selected scientific experts. Another group sponsored by the WHO and looking at regulation of human gene editing has indicated it has no suitable plan or authority. Among some of the stranger proposals that go along with this, one scientist has even proposed that human gene editing shops be licensed in the same manner as cannabis shops.

In the midst of this confusion from elite scientific authorities, a committee in the U.S. House of Representatives proposed that the current prohibition on heritable human genetic engineering be dropped. The U.S. is one of the few countries that had the foresight to put a law on the books that prohibits human germline genetic engineering while allowing gene editing trials to treat patients, and there were sighs of relief after the report in 2018 of the Chinese scientist’s experiments on human embryos when it was realized that such experiments are illegal in the U.S. Fortunately, Congress realized its current law was essential, already meets the call from many scientists and countries for a ban on human heritable gene editing, and restored the current law on an almost unanimous vote.

More positive signs have emerged lately, led by gene editing companies and leading scientists in the field. In a letter to U.S. Department of Health and Human Services (HHS) Secretary Azar, more than 60 scientists, bioethicists and biotechnology executives across industry and academia called for collaboration on a binding global moratorium on human clinical germline experimentation, noting that “Clinical germline gene editing is appropriately prohibited in the United States… Before this status quo is revisited, it is vital that extensive discussions and engagement take place among all major stakeholders, including members of the scientific, medical, patient, caregiver, policy, legal, ethical, and faith communities.” And recently several gene editing companies associated with the Alliance for Regenerative Medicine, a group representing companies involved in cell and gene therapy and regenerative medicine, released a statement articulating their principles for using gene editing in medicine, noting their support for therapeutic uses but not for germline gene editing.

As the world weighs the risks and potential of gene editing, especially heritable genetic changes, our focus should be on helping patients, not on designer babies and making better human beings via germline genetic changes. A thought: maybe the real way to “make better human beings” is teaching people to value every individual human life at every stage and every age, to regard the worth in other human beings, to respect human dignity, to live our lives reflecting those principles, and to defend the value, worth and respect of our fellow human beings. If we practice seeing the Imago Dei in others, it makes us all better human beings (Matthew 22:37-39).

David Prentice, PhD

About David Prentice, PhD

CMDA Member and Vice President & Research Director for Charlotte Lozier Institute

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