Brave Now World

The Ethical Implications of Manipulating the Human Genome

A Baby Makes Medical History

Last month, I posted a story about KJ, a Philadelphia baby, who was born with a rare genetic disorder, CPS1 deficiency. If he survived, he would have severe mental and developmental delays and would eventually need a liver transplant. But half of all babies with the disorder die in the first week of life.

Instead, KJ has made medical history. He received an infusion made just for him and designed to fix his precise mutation. He is now out of the hospital, living at home, healthy and developing well. There’s no way to debate the happy ending to this family’s story, but gene mutation therapy itself raises a host of ethical dilemmas we cannot ignore.

What Constitutes the Essential Human Self?

An ethical dilemma arises when alternative actions or decisions conflict with one another, and each of them jeopardize an ethical principle. This is not the only situation in which technology blurs the boundaries between what is scientifically possible and what is ethically right. Gene-mutation therapy is, however, a most profound example of an ethical dilemma because it changes the body’s basic building blocks, raising questions as to what constitutes our essential self.

Gene-mutation therapy constitutes an ethical dilemma because it changes the body’s basic building blocks, raising questions as to what constitutes our essential self. Thus, by itself, this technology blurs the boundaries between what is scientifically possible and what is ethically right.

Who Decides What Is Normal?

Beyond this most profound question, other major questions arise. One of those twists a knife in my heart, that is “Who decides what is normal, what makes up a disorder or a disability?” As the mother of two children with a “disorder” that meant they failed to meet most of the milestones, our society has claimed as the “norm,” I ask would I have changed them if I could? Like KJ, they were born with rare genetic mutations that were the source of delayed physical and mental development. During their lifetimes, the technology that corrected KJ’s deficiency did not exist.

They grew up, therefore, within the patterns dictated by their particular DNA. And they were unique. Not that every child isn’t unique in his/her/their own way, but my children were spectacularly unique. They didn’t “fit in” anywhere except at home in our family and later in an exceptionally caring residential facility. Yet, in so many aspects, their uniqueness made them delightful and charming. They brought happiness with them wherever they went. As one of my son’s many friends once said of him, “He expected nothing from you.” This was so true despite the reality that he needed so much from so many people.

When Is Different Better?

From a spiritual perspective, I could say my children came into this world to be just exactly who they were. Yet, if when they first became so ill as infants, their doctors had offered my husband and I a treatment that would “fix” what was “wrong” with them, I cannot honestly say that I would have turned them down.

One question gene-mutation therapy raises is, “Could it make society less accepting of those who are different?” If we become acculturated into thinking that all illnesses and disorders can be “healed,” will those who remain “uncured” by the common standard became pariah—the lepers of our contemporary times?

The Question of Equitable Distribution

Even if we can move beyond these disturbing considerations, we must face the fact that this technology doesn’t come cheap. Who is going to pay for it? We are seeing less political will than ever to shoulder each other’s unbearable burdens. Will gene-mutation therapy then become a privilege of the wealthy? If it does, it isn’t hard to imagine a parallel to plastic surgery that goes beyond the lifesaving and truly necessary to the little tweaks here and there to whole new bodies for those who can afford them. We then run up against exactly what changes we will condone.

Should gene-mutation technology be available to “enhance” basic traits such as physical appearance or degree of intelligence? The widespread use of this approach might play havoc with the natural course of evolution and the inherent diversity within the human population.

Pandora’s Box

The situation, although unique to the twenty-first century, strongly calls to mind the well-known Greek myth of

Pandora’s Box (which for those purists out there was a jar.) A myth is not a fairytale, which was often created in fantastic terms to teach morals. Myth is more profound; it is the human way of trying to express a sacred truth for which we don’t have the language. So, we use metaphors, symbolic language.

Pandora’s story is quite complicated, but most people remember her opening a sealed box that belonged to her husband, Epimetheus. In doing so, she let all manner of misery and evil into the world. Only in the last moment, she closed the lid, keeping Hope inside. One interpretation of this is that humans cannot control the evils let loose on the world, but they can keep hope alive as an antidote, a way to ward off the worst illnesses or disasters can cause.

Hopeful Navigation

When comparing the ethical dilemma raised by gene-mutation therapy to the myth, I acknowledge that we cannot expect this technology to “go back in the jar.” I hope, however, that thoughtful discourse will guide us as we navigate these unfamiliar territories. That we face up to the ethical challenges they present. Perhaps our best possibility of ensuring that the advancements we make align with our shared values, include concerns about equitable distribution and respect human dignity

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