Ideas

Ideas | Bonnie Rochman

Customized babies are closer than you think

Pep Montserrat for The Boston Globe

Recently, two eminent groups of scientists and health and medical experts made a startling statement: Under very limited circumstances, it could be permissible to edit the genes of human eggs, sperm, or embryos. This marked the first time that a scientific organization has so explicitly acknowledged this possibility.

Laden as it was with caveats, the report issued by the National Academy of Sciences and the National Academy of Medicine finally recognized that science has advanced to the point that tinkering with embryos is inevitable. But as we pursue this technology, how should we regulate it?

At the moment, the academies would allow for clinical trials involving gene-editing of eggs, sperm, and embryos only when a couple wants to conceive a genetically related child who would otherwise inherit a severe disease such as Tay-Sachs, and only if no “reasonable alternative” exists.

Assuming we can harness technology to do this, it’s just a matter of time before some scientists turn their attention to matters of aesthetics and try to make an embryo just a little bit better. In 2014, The New Yorker reported on China’s Cognitive Genomics project, aimed at delineating the genetic roots of intelligence. “Probably by tweaking a certain number of variants in a positive way,” said Stephen Hsu, a scientist involved in the project and a vice president for research and graduate studies at Michigan State University, “you could rev up human intelligence quite a bit.”

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Throughout time, technological advances — from robotics to the Internet — have promised to elevate everyone’s well-being, but instead often amplified economic divisions. Why would germline editing — modifications to sperm, eggs, or embryos that are passed down to future generations — play out any differently?

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That’s what worries policy advocacy organizations such as the Center for Genetics and Society. They fear that gene-editing will privilege the rich in profound ways, genetically separating them from everyone else, bestowing them with intellectual and physical advantages we can only dream of.

A future in which “designer babies” can be created, tweaked, and polished is not a matter of if, but when. There’s certainly demand for this possibility, demonstrated at fertility clinics, where wannabe parents can select just-right sperm on the basis of race and ethnicity, health and height, education and eye color. They can also choose a donor’s personality and talents, based on essays that many sperm banks ask donors to write.

Perhaps the most egregious embodiment of breeding zeal is the Repository for Germinal Choice (nicknamed the “Nobel Prize sperm bank”), which opened in 1980 in Southern California. The center advertised itself as a provider of sperm from Nobel laureates, though only one (William Shockley, who won the Nobel Prize for physics in 1956) actually acknowledged his association with the bank — and he donated only once.

Engineering genes is a more precise way to achieve desired characteristics. Currently, that technology is focused on the treatment of disease. Editas Medicine in Cambridge, for example, is trying to train CRISPR’s repair kit on Duchenne muscular dystrophy, which causes muscle weakness, especially in boys, and typically leads to death in their twenties. By the end of 2017, the company plans to file with the Food and Drug Administration to begin clinical trials applying gene editing to a genetic form of blindness called Leber congenital amaurosis 10.

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Editas CEO Katrine Bosley, for one, sees no need to tangle with the ethical issues that surround germline editing when there is no shortage of sick people who need help. “There are thousands of diseases that need better therapies,” she says. “We hope we can help those patients.”

And like many other gene-editing companies, Editas is focusing research on less controversial somatic cells, whose modification would take place only within an individual and wouldn’t be inherited by future generations.

At some point, however, we may be able to adapt gene-editing successes in somatic cells and translate them to germ cells. Should this come to pass, some parents may be tempted to inquire about genetically augmenting their children, says Jeffrey Kahn, the director of the Berman Institute of Bioethics at Johns Hopkins University. “Say we know how to encourage muscle growth in these children,” he says. “Couldn’t you use the same technique for a linebacker? The line between curative and enhancement depends upon the person using it.”

And thus begins the slippery slope. A breast cancer mutation conveys only increased risk, not certainty, of developing disease. So how do we feel about editing an embryo to address this mutation even though development of disease is not a sure thing? What about genetic variants, or changes, associated with hypertension? High cholesterol? Obesity?

When thinking about this quandary, it’s also important to consider the person being “fixed,” says Kahn. “Certain types of changes are going to be altering more than others. Have we altered a person’s identity? We need to think about what answer the person would give. Obviously we can’t ask them before they are coming into this world. So we are substituting our judgment for what we think their judgment would be. We are talking about bringing them to what we think of as our ‘normal, natural state,’ not enhancing them.”

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A more troubling aspect is that these technologies would probably remain costly, making gene customization available only to the wealthiest among us.

The race is on to edit genes and prevent disease. But this technology is ripe for abuse.

Economic inequity already exists in the reproductive industry. IVF, for example, is not covered by insurance in most states (Massachusetts excepted), setting up a situation in which only infertile people with well-padded pockets can afford the treatment. And of course the well-off have easier access to good health care via quality private insurance — or their own bank accounts. Steve Jobs, for example, spent $100,000 in 2011 to sequence his genome and that of his pancreatic tumor — a bill not many could hope to afford.

“The beautiful thing about this [gene-editing] work is it offers an opportunity to intervene around the moment of birth,” says Katy Kozhimannil, an associate professor in the Division of Health Policy at University of Minnesota’s School of Public Health. “That said, as we pay attention to the opportunity of that moment, it’s important to bear in mind the value of liberty and justice for all.”

Put even more strongly, the advance of gene-editing technology could lead to “market-based eugenics,” writes Marcy Darnovsky, the center’s executive director. “Permitting human germline editing for any reason would likely lead to its escape from regulatory limits, to its adoption for enhancement purposes, and to the emergence of a market-based eugenics that would exacerbate already existing discrimination, inequality, and conflict,” Darnovsky wrote in National Geographic. “We need not and should not risk these outcomes.”

This is the world depicted in the ’90s sci-fi flick “Gattaca,” where the best babies are engineered to be genetically superior; those who are conceived the old-fashioned way are considered “de-gene-rates.”

Twenty years after the film’s release, scientists still can’t engineer a baby Einstein or a Simone Biles. There is not one single gene that codes for otherworldly intelligence nor for a perfectly executed double layout. “[Designer babies] is a loaded term, a cliché, shorthand for ‘Gattaca’,” says Duke associate professor Misha Angrist, who was one of the first people to have his genome sequenced and share his results in 2009 as part of Harvard Medical School’s Personal Genome Project. “It has a lot of baggage. When my students say, ‘I want to write a paper about designer babies,’ my first impulse is to say, ‘No, please don’t.’ ”

But eventually, scientists will be able to customize children, at least to a degree. And without strict monitoring and guidelines, we can only hope that they maintain high ethical standards. As it relates to Huntington’s disease, which killed Woody Guthrie at age 55, gene editing would mean “changing from Huntington’s on to Huntington’s off,” says Kahn, a member of the National Academy of Medicine who served on the committee that issued the report. “We are not talking about saying, As long as we’re at it, let’s make him 7 feet tall and muscle-bound.”

Hence our need to be vigilant. Last month, members of the committee that issued February’s gene editing report received an e-mail containing a published paper about Chinese research on zygotes (very early fertilized eggs) that examined whether any gene modifications would be reflected in all cells. “If you’re freaked out that someone is currently editing human embryos, then today is the day to freak out,” says Kahn.

Our genes are not necessarily destiny. Who we are and how our traits express themselves reflect a spectrum of influences — genes turning on and off, and the impact of our environment, which includes where we live, who our parents are, and our access to health care, among so many other factors.

But continued oversight by an international consortium of scientists and bioethicists is critical. As this technology improves, which it inevitably will, we need to guard against becoming enclaves of finely tuned aristocratic offspring, an oligarchy of genetic haves and have-nots. Stringent guidelines are the key to navigating the future of making babies without losing our humanity — and theirs.

Bonnie Rochman is the author of “The Gene Machine: How Genetic Technologies are Changing the Way We Have Kids — and the Kids We Have.” Follow her on Twitter @brochman.