2105: A Designer Baby Odyssey

By: Laura Browder, Associate Attorney at Wyatt Early Harris Wheeler LLP

Celeste was yanked out of a dreamless sleep by a sudden wave of vibrations traveling up her left wrist. Fumbling with the sleek ceramic face of the watch – if it could even be called a watch, with its time-telling ability often overshadowed by its myriad other capabilities – she managed to align her right index finger on the screen with the surgical-like precision that the device seemed to require. The vibrations stopped, only to be replaced by the shrill voice of Isabelle Hall, her crisis-prone assistant.  

“Celeste,” chirped Isabelle, “Where are you? It’s eight o’clock.  The Van der Bergs have been here for over an hour.”

“Um, yes – sorry, Isabelle.  I must’ve overslept.  Please let them know I will be there shortly.” Celeste replied, barely even trying to mask the sleep in her voice, and then hung up, without waiting for a response.

Ending the call prematurely was probably just as rude and unprofessional as being late to work, but Celeste could not bear the thought of enduring another rant from Isabelle about the ins and outs of professional decorum. Besides, it would take more than a few snoozed-through alarms and some lackluster phone etiquette for Celeste to lose her job.  Though she wondered if that would really be a bad outcome, at this point. Work had become less and less tolerable lately.  Pushing thoughts about her career’s possible trajectory (or lack thereof) out of her head, she rolled out of bed and padded over to her expresso machine.

“Energia,” she said to the machine’s now-illuminated screen, “make me enough coffee to survive the next twelve hours.”

Without hesitation, the machine sprang into action, happily grinding coffee beans and whirring while it steamed milk and simultaneously projected the morning headlines of CNN onto the cream-colored walls of Celeste’s spacious kitchen.

“…and we look forward to a day filled with remembrance and appreciation for the late, great Catharine Sanger, who was the first person in history to have been granted the authority to genetically modify human embryos back in 2016, and who pioneered the CRISPR-Cas9 gene editing technology, with which we are all so familiar today,” said a stern-looking newscaster, who was dressed in a sharp suit and stared unflinchingly into the camera.

Thanks to the surround-sound speakers hidden in every room, any media played in the house sounded as if it was coming from within the walls, and it always gave Celeste the unsettling feeling that the newscaster, or whoever happened to be speaking, was right there in the room with her. The young reporter continued to laud the many achievements of Dr. Catharine Sanger. Celeste sipped her coffee as she listened.

“Part of what made the CRISPR-Cas9 technique so ground-breaking was the fact that it was the first gene editing tool that was not cost-prohibitive for the average researcher and it only took weeks to conduct, as opposed to earlier techniques, which often took years,” said the reporter.  “Dr. Sanger  was passionate about making the gene editing technology relatively affordable, in hopes that it would increase access for people of many different socioeconomic classes, as opposed to being available only to the super rich.”

The reporter paused, as if to contemplate what he had just said, and then turned to face another angle of the desk, revealing a wrinkly old man, dressed in a thick cable knit sweater, who was seated several chair-lengths down the reporting desk. Celeste found herself curious as to how long he had been sitting there, waiting to be acknowledged.

“Here, we have Dr. Henry Fitzgerald, a long-time colleague of Dr. Sanger, to tell us more about Dr. Sanger’s amazing career,” said the reporter, nodding toward the guest.

“Thank you, Allen, for having me,” Dr. Fitzgerald said in a raspy voice. “After co-inventing the CRISPR-Cas9 gene editing technique and conducting the first gene editing experiments on human embryos, Dr. Sanger led the charge on perfecting the technique to ensure its safety and accuracy.  Many people were quite wary of the technology in the early days. Thanks to her efforts, the CRISPR gene editing technique launched for commercial use in 2024, less than a decade after its invention.  We were constantly making new discoveries during that period,” Dr. Fitzgerald said, a faint smile crossing his face.

“Of course, Dr. Sanger was an undeniable leader in the field of genetics, but she was also quite a leader in the ethical and regulatory arena, which was, and is, constantly evolving and involves many different perspectives. It was very important to Dr. Sanger that the regulation of genetic modification technology result from a collaborative effort of multiple disciplines, including hard sciences, social sciences, ethics, and politics/governance. She sat on several regulatory boards and committees that were devoted to ensuring the ethical promulgation of gene editing technologies. She certainly did not want the technology to be abused or lead to some slippery moral slope.” Dr. Fitzgerald chuckled and shook his head, giving the reporter a cursory glance.

Celeste knew she should be getting ready for work, but she was captivated by the old man’s matter-of-fact tone and his apparent adoration of his esteemed late colleague. Just a few more minutes, thought Celeste.

The old man continued, “In 2026, Dr. Sanger was diagnosed with early onset Alzheimer’s. Fortunately, she was able to undergo CRISPR gene editing, which cured the disease. As you may know, a common side effect of such curative gene therapy is an effective aging suspension, and sometimes even a reversal of aging, which accounts for Dr. Sanger’s youthful glow, even well after she surpassed her one-hundredth birthday. I wish I could say the same for myself,” Dr. Fitzgerald said, chuckling, “But I suppose I can’t complain about wrinkly skin when the gene editing technology has still managed to greatly extended my life expectancy. I’ll be 134 years old next month.”

Celeste could not help but to smile at the crystal clear projection of the man, almost life-sized, who appeared to be giddy over the fact that he had reached such a venerable age.

“Although Dr. Sanger initially intended the gene editing technology to be employed almost exclusively for the cure and prevention of heritable diseases and other disorders, she eventually accepted a broader array of uses for her technique as the years went on, including the augmentation and selection of certain desirable traits by parents for their future children, as well as suspension of the aging process. In fact, in the year 2070, nearly six decades after Sanger invented the CRISPR technique, she took advantage of the technology’s procreative side, utilizing the gene editing’s ‘deleting’ capacity to ensure that her unborn daughter did not inherit early-onset Alzheimer’s disease but also modifying a few other genes to ensure optimal intelligence and health. I suppose it’s true what they say, that ‘what seems outrageous today will seem normal tomorrow.’  Catharine realized that tweaking select traits, in addition to deleting certain genes responsible for disease, was not such a bad thing after all. Especially considering the fact that, nowadays, gene editing is somewhat of a universal norm, and kids without some degree of genetic modification are almost considered to be at a disadvantage.”

Celeste felt her wrist vibrate with the familiar truncated buzz that signaled the arrival of a new text message. Regretfully, she drained the remainder of her coffee in one gulp and stood up from the table. Once in her closet, she by-passed the endless racks of silk blouses, crisp pencil skirts, and delicate dresses, reaching, instead, for her usual daily uniform.

Hurriedly, Celeste scraped her long blonde hair into a messy bun, which made her resemble a caffeine-addled ballerina in stark, white scrubs. She brushed her high cheekbones with a bit of blush and swiped on a few coats of mascara, hoping that this would constitute enough “put-togetherness” to avoid any further lectures from Isabelle.  Then again, it was hard for anyone, even Isabelle, to argue that Celeste needed makeup, or much of anything, to look beautiful. Celeste was a rare beauty, even in this newfound age of genetic modification to point of perfection; it was more than her perfect facial symmetry, or her cobalt blue eyes. Celeste seemed to glow, almost as if she was other-worldly.  There was no gene modification for that quality.

She grabbed her oversized bag and looped the hospital id badge around her neck, staring down at the bold black letters that read “Dr. Sanger” in neat type. She sighed, glancing up just as a familiar picture flashed across the screen. Celeste stared at her mother’s beaming face, frozen in time, with those same cobalt eyes looking into her own. Miss you, Mom, Celeste thought. More than you could possibly know.

Even though it was only 8:45 in the morning by the time Celeste arrived at work, the hospital’s Genetics Annex was already buzzing with life. Just as she had expected, the Van der Berg family had parked themselves on the pristinely white couch that sat closest to the arched entrance that led to the offices and exam suites. The Van der Bergs had occupied this exact spot of the waiting room every time they had visited the Annex, which had probably been more than a hundred times now. Celeste could only guess that they believed, perhaps subconsciously, that the closer they sat to the Annex’s professionals and its millions of dollars worth of equipment as they waited, the more control they would have in the actual process, as if they were sneaking a toe across the starting line before the race had even begun.

Celeste loathed the way that the Van der Bergs approached genetic counseling and modification, as if it were some grand sporting match, but competition and control seemed to be sacrosanct within the Van der Berg household. This was reflected through every facet of their lives—at least those to which Celeste had been privy. They were never late, never flustered, never at a loss of words, and never without the means to find a solution to any problem. Most often, all five of them looked as though they had just been carefully cut out of a glossy magazine and pasted upon whatever surface that you happened to find them. Veronica had been a runway model before she married Leo Van der Berg, a big time Wall Street banker, and they began their quest to assemble the world’s most perfect family. Three genetically modified children later, it seemed as though they were succeeding.

Then there are the children, Stella, Naomi, and Sebastian – the three wonder children whose existence was the result of thousands of hours of careful genetic tweaking, all in accordance to their parents’ strict instructions. Perfectly symmetrical faces, upon which aristocratic noses perched and dazzling emerald eyes sparkled, all three children were as beautiful as if they had been sculpted by no less than Michelangelo himself. And they had brains to match their beauty, with IQs high enough to secure their places in the future classes of any Ivy League school they desired, assuming they were so inclined.  Celeste had a feeling that Veronica and Leo would ensure that their children did not have any inclinations to the contrary; they were parental tyrants, rigorous and unyielding in the shaping of their children. The very contours of the Van der Berg children’s DNA had been custom-fit to elegantly contribute to the masterpiece that was the Van der Berg family. Or at least that’s how Veronica and Leo viewed their children.

“Mr. and Mrs. Van der Berg?” Celeste chirped, stepping onto the plush white carpet that covered the waiting room, “I’m so sorry to keep you waiting.”

Leo Van der Berg stood and met Celeste’s outstretched hand in what seemed like one fluid motion. He was very tall, statuesque, almost, and he had a loud, booming voice that sounded as if he had an invisible microphone clipped to his shirt.

“It’s no problem at all, Dr. Sanger. We have had plenty to keep us busy this morning, isn’t that right, team?” Leo said brightly, as he turned toward his children, who had silently congregated behind their father.

All three children were, as per usual, impeccably dressed in matching button-downs and wrinkleless chinos. Each child held a different book that was easily as big as his or her head. Celeste could have sworn that one of them held a book entitled “Financial Calculus,” though the oldest child could not have been more than about nine years old.

“We were just so sorry to hear about your mother,” Veronica cooed as she placed a manicured hand on Celeste’s shoulder, which prompted Celeste to break her gaze away from the children.

“Thank you,” replied Celeste. “It has certainly been a difficult couple of weeks.  But I do take comfort in continuing on with the work that she began.  If you’ll follow me back to my office, we can begin.”

Celeste spent the entire remainder of her morning, and much of her afternoon, with the Van der Bergs on their preliminary meeting regarding the creation of their fourth child.  They wanted a boy, of course, to round out their currently gender-lopsided family. He would have green eyes and caramel-colored hair, as was standard for all of the Van der Berg kids.  He would need to be athletic, of course, but also very smart. And maybe he could have a bit more muscle tone than Sebastian, since Sebastian had failed to make the competitive youth soccer team last month. And a knack for music wouldn’t be a bad idea, since they heard that being a child virtuoso looked very impressive on prestigious boarding school applications that loomed in Child Number 4’s future. The list went on and on.

After being serenaded with the Van der Berg children’s rendition of the Family von Trapp’s “So Long Farewell,” Celeste watched the three wunderkind march out of her office in an orderly single-file line. Veronica and Leo then thanked Celeste, exuberantly, and told her that they looked forward to seeing her next month for the sample collection meeting, for which Children Numbers 1 through 3 would not be present. Celeste could not help but to sink back into her large desk chair, awash with relief, the second that the heavy door clicked shut behind them. Working with the Van der Bergs was not like handling the Genetic Annex’s typical clients. It was utterly exhausting.

Most of Celeste’s clients came in with basic predilections regarding what traits to emphasize in their unborn children, or altogether delete, such as those linked to diseases. Often, clients had decided on a gender preference by the time they had their initial meeting with Celeste, though not always. By contrast, each time the Van der Bergs entered her office in anticipation of engineering a super-child, they came armed with pages upon pages of detailed notes about each and every enhancement they wanted to bestow upon their unborn child. Since both Veronica and Leo had been extensively genetically edited themselves, there was not much gene deleting to be done, as their genes were virtually disease and defect free. Thus, the entire objective of each of the Van der Bergs’ visits was to engage in a rousing game of genetic modification, from which they would eventually emerge with the coveted trophy child.

Celeste knew it was hypocritical, and unprofessional, to judge the Van der Bergs for their unabashed obsession with creating genetically “perfect” children with which to adorn their family. After all, her own mother had prenatally enhanced Celeste’s intelligence.  Even though Catharine had been opposed to such “supplementary” gene editing when the technique was first invented, she had eventually embraced the practice due to its widespread acceptance throughout society, as well as its rather undeniable benefits, to both child and society. Yet, there was something particularly off-putting about how unapologetically the Van der Bergs lusted after genetic perfection as some prize to be won.  Celeste sometimes got the impression that Veronica and Leo thought of their visits to the Genetic Annex as if they were simply dropping by an exotic car dealership to order their next customized luxury vehicle, instead of trying to conceive a healthy child. To Celeste, working with the Van der Bergs often felt more like science and statistics than love and the miracle of life.

Celeste swiveled in her chair to face the floor-to-ceiling window behind her desk and gazed out across the river below.  She could see the cookie-cutter bistros and little shops winding along the opposite bank, with ant-sized people bustling along, presumably in a hurry to check off the boxes of their daily to-do lists in order to assure themselves that life was capable of being controlled, and thus, was capable of being perfect. She could almost hear her mother’s voice, honey-covered in its smooth sweetness, trying to soothe the rough edges of her daughter’s bewildering cynicism.

“The field is changing, sweetheart,” her mother had told her, not all that long ago.  “You have to be able to change with it, or at least know where you’ll draw the line for yourself.  Sometimes we draw lines in the sand. Goodness knows I did, and that’s OK.  Changing your view is inevitable, sometimes, especially in science. When I first started, some people thought that even screening embryos for certain late-onset genetic diseases was potentially unethical, because it might exacerbate social stigma associated with disease and spread misinformation about the abilities and quality of life of people that actually lived with such diseases. Then, after a while, people began shifting their views to accept such screening, especially once they realized that proper regulatory precautions were firmly in place. Other times, we draw lines in stone, and it’s important to recognize the difference between the two. You know to always remember the principles of non-maleficence and beneficence. Do no harm. You have to be the judge of that. There are some lines that just shouldn’t be crossed or simply wiped away, regardless of what society might be telling you.”

Where is this line of mine?  Celeste wondered. I feel like I am rapidly approaching it these days. But then she thought of the Ellises, her very first clients. She had just completed her genetic modification residency and was officially starting as an Associate Genetic Modification Counselor at the Genetics Annex, under the supervision of her mother, the Chief Geneticist. It was during that period that the major shift from the patient-physician relationship to the client-physician relationship was made, signifying a newfound disconnect between the practice of medicine and genetic editing. Celeste had not realized the import of this at the time, though it had begun to weigh more heavily on her as her career continued and as she perceived that many of her clients just wanted her to follow their instructions instead of consulting with her for a professional opinion.

James and Mary Ellis were a classic case of infertility struggles, having tried for years to conceive a child, without success. Finally, they mustered up the courage to make an appointment at the Genetics Annex. From the moment they walked in, Celeste had loved them. He was an architect; she was a painter. They adored one another, flaws and all.  Above all else, their unbridled energy and pure joy at the prospect of their unborn son or daughter was so intense that it might have been able to power a small city block for weeks on end. Celeste realized that they did not want to force some pre-planned identity upon their unborn child, one of their own design, for their own fulfillment, like Celeste would later learn that was the way of some of her clients. Rather, the Ellises simply wanted the ability to bring a healthy child into the world, and to appreciate his or her gifts just as they developed before their eyes. That was what the genetic editing was all about, in Celeste’s view. Helping the Ellises bring a healthy baby boy, and later, a healthy baby girl, into the world made Celeste feel as though she was truly doing good in her profession. She only wished that she felt the same way with all of her clients.

Later that night, as Celeste finally returned home under the glow of the moon, with greasy, Chinese takeout in hand, she found herself taking comfort in the age-old fact that nature was always going to be in competition with nurture. No matter how much couples like Veronica and Leo tried to override any natural flaw with every natural advantage, the environment, and its related chaos, was still largely left to fate. Sure, parents could force their children to attend violin lessons, or drag them off to two-a-day football practices, or stay up late scrutinizing their little one’s work product for the school science fair, but there was still an element of chance, of fate, maybe, that touched every aspect of the world in which both parent and child lived. Celeste had to admit that, to some extent, the gene editing process was merely one more extension of parental authority in trying to mold their offspring. Parents were entitled to shape their children, in a general sense.  Besides, certain things could not be controlled, for no matter how perfect one’s genetic code might be, there is no controlling for every environmental interaction with that code. In this, Celeste found solace. Every child still had some degree of autonomy and choice in this regard, despite whatever genetic edits were bestowed upon them. Besides, even in the days before genetic editing, it was not as if the unborn child was afforded a choice in his or her genetic identity either.

Maybe it’s not all just car-shopping and competition, all in the name of some deluded genetic arms race, she thought, as she scraped the contents of the red and white plastic carton onto a large serving dish. Maybe I’ll never understand the feeling until I’m a parent myself.

Celeste imagined what it would feel like to hold a tiny bundle in her arms, a bundle that shared her same cobalt blue eyes, her same gift of intellect, and her same freedom from the burdens of disease. Her heart seemed to swell up in her chest the longer she pictured the perfection of holding her own child. Suddenly, two hands were squeezing her shoulders, causing her to drop the two plates that she had been holding onto the table with a loud clatter.

“Did I startle you?” asked her husband, with a grin, as she turned around to face him.

“No, I mean, yes, a bit,” Celeste said, “I’ve just had a long day.”

“Well,” Sam replied, “It’s a good thing that the hard part is over.  There’s nothing that some good Lo Mein and red wine can’t fix, right?”

Celeste smiled at him, feeling the day’s heaviness slip off of her as she took her seat beside him at the table. Sam raised his long-stemmed glass and clinked it to hers, attempting to pull off a grand “cheers,” but knocking over Celeste’s glass in the process.  A torrent of Pinot Noir came cascading down onto Celeste’s white scrubs. He met her eyes, bashfully, then they both burst out laughing. She knew then that everything would be alright, because even among two people who were textbook definitions of genetic perfection, there was still a bit of surprise. And surprise, Celeste thought, is what makes life worth living.

Laura Browder is a 2017 graduate of Wake Forest University School of Law.

 

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