Ethics & Public Policy Center

Gene Editing and Planned Personhood

Published in Public Discourse on November 12, 2020


The specter of “planned personhood” crops up again and again throughout science fiction, from Mary Shelley’s Frankenstein to Aldous Huxley’s Brave New World and Star Trek’s “Eugenics Wars.” Genetic engineers in such stories are morally compromised at best, depraved at worst; their experiments bump up against human mysteries better left untouched. The 2012 discovery of the CRISPR/Cas-9 genetic scissors has brought us closer to realizing some of the best and worst of these imaginary worlds, and the scientific community has struggled to answer questions that may never be properly settled.

In October 2020, Emmanuelle Charpentier and Jennifer A. Doudna received the Nobel Prize in Chemistry for their contributions toward the development of CRISPR technology, which can be used to alter the DNA of plants, animals, and micro-organisms with extremely high precision. As the press release announcing the winners put it, CRISPR genetic scissors make it “easy to rewrite the code of life.” Notably, the scissors were not invented by researchers in a lab, but rather discovered in a bacteriophage—one of the lowest forms of life—and adapted for scientific use. In a sense, CRISPR technology was buried in creation. Antibiotics, which were first found in mold, are similar. We are still scraping petri dishes to find instruments that have been available as long as life itself.

Despite receiving the Nobel for their efforts, however, both Charpentier and Doudna have expressed grave concerns regarding some of the uses to which their discovery has been put. In 2018, the scientific community was shocked by the revelation that He Jianku, a biophysics researcher in China, had genetically edited and implanted at least two human embryos under ethically suspect conditions. The resulting twin girls—the now-famous “CRISPR babies”—made international headlines. While their identities and welfare are not publicly known, many experts who reviewed He’s work are convinced that the girls suffer from some form of genetic disability. Doudna said she was “stunned and horrified” by his research, and Charpentier joined seventeen other scientists and ethicists in calling for a moratorium on human genome editing, at least for the purpose of creating a human child.

Others were outraged by He Jianku’s work for quite another reason: the controversy might create roadblocks for their own experiments. Oregon-based biologist Shoukrat Mitalipov, who famously presented the world’s first cloned monkeys in 2007 and went on to clone human embryos in 2013, has led research on dozens of embryos specifically created with inherited disease mutations, and he claims to be “disgusted” by the idea of a moratorium. Other scientists are engaged in similar work: Russian biologist Denis Rebrikov is attempting to correct genes that cause deafness and to create embryos that are resistant to HIV, while Columbia University’s Dieter Egli is attempting to correct a blindness-causing mutation in human embryos. None has produced flawless results, yet all seem to believe it is only a matter of time.

Part of the epistemic problem with these experiments is that we will not be able to know the full effects of this sort of “gene therapy” until after a child is born—and perhaps not for many years later. Each child created in this way, in other words, constitutes an experiment. There is no way to comprehensively test the effects of genetic editing in advance. And while Egli, Mitalipov and many others dismiss concerns about the morality of creating and destroying human embryos for some potential greater good, others are not so sanguine. The difference between embryos and other human organisms is one of maturation, not of kind. Researchers may act as if the question of whether embryos deserve protection is null, but they have not settled it.

The Purpose of Medicine

Yet another problem concerns a crisis of character in the medical discipline, which no longer appears to have any clear limiting principle regarding the uses of medical technology. In a 1975 essay in The Public Interest, “Regarding the End of Medicine and the Pursuit of Health,” Leon Kass noted that as medicine’s technical prowess and government funding have increased, the discipline appears more and more perplexed: “When its powers were fewer, its purpose was clearer.” Part of the conundrum stems from the fact that the creation of new medical technologies has long been the domain of those outside the medical profession; doctors are handed new treatment methods by research institutes or pharmacological companies and told by the government or insurance agencies what they will be paid for using them. This has complicated the patient-physician bond and has resulted in an expanded and often muddled view of both health and the physician’s responsibilities.

A doctor is not strictly speaking a businessman; in the traditional physician-patient relationship, the “customer” is not always right. Neither is he primarily a scientist who serves the cause of medical progress, or a bureaucrat filing away medical information for administrative use. Since antiquity, the focus of the physician has been the individual patient and what Kass calls the patient’s “wholeness” or “well-working,” which is generally not limited to healing a specific illness or injury. Medicine was long considered the “very model of an art, of a rational activity whose powers were all bent towards a clear and identifiable end.”

That end is no longer so clear, and physicians are increasingly expected to perform and be compensated for discrete tasks while bearing little to no responsibility for the general welfare of their patients. In keeping pace with advances in medical technology and an endless flurry of government and patient demands, doctors have allowed their discipline to be shaped by them. As Kass writes, the medical profession “must not only improve its immunity against foreign additions to its domain, but must also work to restore its own wholeness.”

My Daddy’s Name Is Donor

What has undermined this wholeness? Kass suggests procedures such as sex-selective abortions, extreme cosmetic surgeries, and damaging brain operations meant to modify behavior. But perhaps the most striking example concerns another kind of genetic technology: the widespread use of anonymous sperm donations. Though the statistics on how many children in the U.S. were born via anonymous sperm donation are not clear, in 1979 an estimated 250,000 people had been conceived in this way. The number of sperm banks has rapidly increased since then. The business of sperm donation was originally designed to protect the confidentiality of both donors and parents; for a time, many physicians would artificially inseminate only married women. A culture of secrecy was built around the wish to protect couples who were struggling with infertility. Often, children were never told the truth about their birth parents.

That has changed, as single women and women in same-sex relationships have increasingly turned to sperm banks in hopes of becoming parents. Doctors have accepted this trend, and thousands of children have been brought up knowing that their fathers never intended to meet them. This has led to some startling human consequences. In June 2019, the New York Times published a photo essay by Eli Baden-Lasar, a young man who traveled the country for years, determined to meet and photograph the many half-siblings he had discovered through a donor sibling registry.

The fact that Eli’s father was an anonymous donor was never concealed from him by his two mothers, but at the age of eleven he began pressing them for more information about this man. They gave him a photocopy of a questionnaire the donor had filled out at the sperm bank they used. As Eli wrote,

I remember carrying the form with me in my backpack, taking it to school and studying it occasionally when I remembered I had it. There was this sense of touch—this person had used his hand to answer these questions; I could see where he had crossed things out. It wasn’t that I was so desperate to imagine who he was; it was enough to have proof that he was real, entangled with who I am and yet, as that document showed, totally separate. The form made him concrete, if inscrutable. It also gave me the sense that there was this larger world, this process and this bureaucracy that my existence was built upon. It was a way to help me understand myself.

Later, when Eli was 19, he learned that two of his childhood friends from a summer camp for same-sex families were in fact half-siblings. Soon after, he began to search for potential half-siblings of his own. He found 32 on a registry, including a childhood friend. The discovery filled him with a mixture of “glee and horror.” Eli contacted them all.

An amateur photographer, he felt compelled to assemble a family portrait of sorts by arranging personal photo shoots with these people who were not quite friends but could never be strangers. He searched for himself in their faces, occasionally heard himself in their laughter. In the snippets the Times included of their interviews with Eli, many expressed a sense of deep alienation; one young woman said that the sheer number of half-siblings she had discovered “made me feel like a statistic rather than an actual person. I feel drowned out with the numbers.” Another expressed grief at feeling little genuine kinship with her newfound family: “I learned that there are so many of them it’s hard to feel included. I’m an only child and was expecting a sibling relationship, not just like, ‘Hey, cool, we have the same blood, whatever.’ I told myself that it wasn’t a big deal that I had siblings, just to numb the pain.” Eli experienced a similar “feeling of having been mass-produced.” He wanted his photographs to serve as a corrective to that; as he wrote, “The emotional labor of the project was intended to be almost reparative—a response to the transactional nature of the sperm bank and the financial exchange our parents made in order to create us.”

There are many other stories of young people who feel they have been wronged by the process through which they were created. In the Los Angeles Times in March 2018, Courtney McKinney recounted her mostly fruitless attempts to learn about her father, beginning when she was 19. She was proud of graduating from an Ivy League school and wanted him to know. Later on, she had questions about her family’s medical history. She received a digital copy of the form he had filled out, but no other information. McKinney concluded that while she would like to know her father, “that likely will never happen. The second best thing I can do is explain to prospective parents, physicians, policymakers, and donors why the burden of anonymous parentage should not continue to be placed onto more people. The ‘products’ this industry creates are humans, and the laws that govern it should reflect that.”

It might seem self-evident that people would want to know who their biological parents are, but the sperm-donor industry, physicians included, overlooked this basic element of human wholeness. And since there are no laws limiting the number of children that may be conceived by a single anonymous donor (even assuming such a law could be enforced), the children of these donors face strange interpersonal hurdles. One of Eli’s half-siblings was advised at the age of seven to take DNA tests when dating to avoid accidentally dating a sibling; Eli often finds himself looking at the faces of strangers and wondering if they, too, are among his close relatives.

Interestingly, the recent rise of genetic-sequencing companies like 23andMe has undermined the privacy of anonymous donors and allowed thousands of people like Eli to find half-siblings, often a hundred or more. This has given rise to its own complications, however. A sperm donor who presented himself as a neuroscientist was in fact a college dropout with a criminal record; the parents of his 36 children worry they may have a predisposition toward mental illness. In other cases, doctors used their own sperm rather than that of selected anonymous donors, an act that is now considered sexual assault in several states.

People As Products

In the pages of great science fiction, we often find the perspectives of those who have unwittingly been the subjects of experiments meant to improve society or simply, as Mary Shelley put it in Frankenstein, “to penetrate the secrets of nature.” The classic short story by Daniel Keyes, “Flowers for Algernon,” is told entirely from the perspective of Charlie, a developmentally disabled young man who undergoes an operation to become smarter. Within weeks, he has transformed into the world’s greatest living genius, and then just as quickly regresses to his former state. In the interim, Charlie comes to understand that the people he thought were his close friends had been bullying him for years, and that one of the neuroscientists working on his case was an avaricious and shallow man; Charlie represented little more than a career triumph to him. Charlie also figured out what had gone wrong in his operation and knew with certainty he would be stripped of his newfound abilities. He longed to hold on to the self he had discovered, to no avail. Charlie ultimately withdraws from all the people in his life who had known him in his shining moment.

The tension between Dr. Viktor Frankenstein and the creature he formed as part of his quest to unveil “the secrets of heaven and earth, . . . the outward substance of things or the inner spirit of nature and the mysterious soul of man,” similarly forms the core of Shelley’s novel. The creature had been abandoned in a forest by Viktor, but was eventually cared for by kind cottagers. Yet he cursed, first his utter ignorance of his creator and past life, and later the knowledge of how different he was from those around him:

My person was hideous and my stature gigantic. Who was I? What was I? Whence did I come? What was my destination? These questions continually recurred, but I was unable to solve them. . . . Like Adam, I was apparently united by no link to any other being in existence; but his state was far different from mine in every other respect. He had come forth from the hands of God a perfect creature, happy and prosperous, guarded by the especial care of his Creator; . . . when I viewed the bliss of my protectors, the bitter gall of envy rose within me.

Their fate is echoed, however distantly, in Courtney McKinney’s appeal to the genetics industry to remember that the “products” being created are human beings. Their own self-awareness must be considered, in addition to their physical and material welfare. What is missing from the lives of Eli and his half-siblings is real, but not easily quantified. It may be found in G-d’s pledge to the prophet Jeremiah that “before I formed you in the womb, I knew you.” In some way, it seems, we need to be known by our creators.

But how well? To their credit, Charpentier and her colleagues did an admirable job outlining some of the potential pitfalls of failed or even effective “germline” editing, or editing heritable traits, in their call for a moratorium:

The societal impacts of clinical germline editing could be considerable. Individuals with genetic differences or disabilities can experience stigmatization and discrimination. Parents could be put under powerful peer and marketing pressure to enhance their children. Children with edited DNA could be affected psychologically in detrimental ways. Many religious groups and others are likely to find the idea of redesigning the fundamental biology of humans morally troubling. Unequal access to the technology could increase inequality. Genetic enhancement could even divide humans into subspecies.

Moreover, the introduction of genetic modifications into future generations could have permanent and possibly harmful effects on the species. These mutations cannot be removed from the gene pool unless all carriers agree to forgo having children, or to use genetic procedures to ensure that they do not transmit the mutation to their children.

The future of germline editing includes practical risks, as the research of He Jianku, Dieter Egli, and others shows. But the question of whether it will happen should hinge not only on whether it can be safely done. In future, physicians should carefully consider their role in relation to their patients, which is different from that of a scientist working with specimens in a lab. Our idea of ourselves matters, and tinkering with the code of life may sever that idea.

Devorah Goldman is a visiting fellow at the Ethics and Public Policy Center, and a research analyst for the Tikvah Fund. 

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