SALT LAKE CITY — What if you could protect your unborn child from disease? Or endow him with a full head of hair or stunning green eyes? What if you could, but you didn’t? Is the world ready for the moral responsibility of designing humans?
Ready or not, these are among the ethical conundrums presented by CRISPR-Cas9, a tool that has made gene editing fast and simple. And some parents have already faced the decision about disease; the first gene-edited babies are almost old enough to walk.
Last year, a Chinese scientist used the tool to tweak the genome of twin girls to make them immune to HIV, sidestepping scientific norms and moral considerations.
Blowback was immediate and overwhelming.
Even Jennifer Doudna, who co-invented CRISPR-Cas9 in 2012, denounced the work of He Jiankui as “reckless experimentation” and the “shocking misapplication” of a scientific advance that could give human beings the power to improve their own progeny.
The outrage of Doudna, and other scientists worldwide, stems, in part, from concerns about safety. The technology is still too new and dangerous to use in embryos, Doudna has said. And most scientists are united in the belief that the tool should only be used to treat or prevent disease. While some assisted-reproduction clinics already offer eye-color selection, it’s unclear if and when a child’s intelligence could be improved by gene editing, or if that use would ever be legal in this country.
The world also hasn’t had enough time to process the moral questions that gene editing raises, says the co-editor of “Human Flourishing in an Age of Gene Editing,” a new book that encourages thoughtful consideration of unsettling issues that will confront both scientists and families as the technology matures.
“The first parents offered gene editing of their gametes, embryos, fetuses or children will be called on to make decisions that I did not have to make,” writes Josephine Johnston, director of research at The Hastings Center, a bioethics research institute in Garrison, New York, that produced the book with support from the John Templeton Foundation.
Discovered by Doudna and French researcher Emmanuelle Charpentier, CRISPR-Cas 9 mimics a naturally occurring process by which bacteria destroy a virus. Scientists use a protein called Cas9 and a snippet of RNA to find, and then cut DNA, causing genes responsible for disease to be shut down or altered. Some scientists compare the process to the “find and replace” function on a computer document. And it doesn’t take a rocket scientist to do it.
“The simplicity of the CRISPR-Cas9 system allows any researcher with knowledge of molecular biology to modify genomes, making feasible experiments that were previously difficult or impossible to conduct,” Doudna and other scientists wrote in a paper published in the journal Science in 2015.
The ease with which gene editing can be done portends a future in which parents could have unprecedented control over their descendants, raising not just ethical but theological questions. Through CRISPR-Cas9, does God invite us to participate in creation, or is gene editing another apple of Eden best left alone?
Johnston spoke with the Deseret News recently about some of these questions and what they will mean for the American family. The interview has been edited for clarity and length.
Deseret News: One of your contributors writes that CRISPR-Cas9 caught the world by surprise. Why is that?
Josephine Johnston: Gene transfer research had been going on throughout the 1990s. You might remember that Jesse Gelsinger died in a gene transfer study at the University of Pennsylvania in 1999. He was a healthy young man who had a genetic condition, but it was managed and he was doing well, so it was quite a dramatic thing when he had a reaction and died.
There was a lot of consideration of what went wrong, including accusations that it was an avoidable death, and this was an event that slowed down the work. And suddenly, this new tool comes on the horizon that, seemingly at least, overcomes some of the previous problems.
DN: Your contributors raise challenging questions, one being the idea that some people consider aging a disease that can and should be cured, and also that in coming decades, parents could have not only the right, but the moral obligation, to edit their children’s genes. These questions are so thorny it’s hard to imagine that we will ever arrive at a consensus. Can we get there before gene editing in human beings begins in earnest?
JJ: I don’t know that we will; it seems unlikely. There is some consensus around safety, consensus that we don’t want to create new persons or generations who are worse off than where we are. But on the broader ethical questions, we’re unlikely to see international consensus. I will note that countries have, for decades now, been asking themselves how they will regulate, or if they will regulate, ART, or assisted reproductive technology, which is not the same as CRISPR but has some of the same questions associated with CRISPR.
Countries have made slightly different decisions about this and some have much more restrictive policies, such as Germany.
DN: Where does the U.S. stand on this?
JJ: With ART, you can select embryos that don’t have genetic conditions you’re worried about. The extension of that, selecting for nonmedical traits, like eye color, is very controversial, but it’s not illegal in the U.S. And plenty of clinics will allow you to select for sex.
DN: One auxiliary issue that is not discussed in the book is the “14-day rule,” the period of time when it is considered acceptable to allow an embryo to develop in a laboratory. Some researchers want to extend that to 28 days or longer.
JJ: It’s not a law in the United States; it’s an international guideline that most research institutions subscribe to. It’s a very strongly held rule, I would say, and I think a journal would not publish the research of anyone who who tried to submit research on embryos developing beyond that point.
But we’re certainly having discussions in the ethics community about the 14-day rule because for the longest time, it was a rule that sat there and no one could come close to getting there, so it wasn’t even on people’s radar. People just assumed it was an important limit that the public needed to see. But one of the big ethics questions that doesn’t get a lot of discussion is, how would you actually do the research to find out if editing embryos was safe?
DN: How does the prospect of fast and simple gene editing stand to change the notion of what a good parent is?
JJ: It’s a significant burden to put on prospective parents, the idea that they need to be even more vigilant about the genetic traits that they pass on to their children. And so I really hope that editing your embryos, or your sperm and egg before you make embryos, does not become an obligation of parenting, but I can see the ways in which other reproductive technologies have, at least for some sectors of society, become something they feel they ought to do.
Generally, there is the sense that parents today are being asked to do more than parents in the past. The bar is constantly being raised as to what counts as good parenting. My concern is that we might start adding even more of these technological interventions without really taking account of the burdens associated with them. I’m not imagining that the U.S. would pass any kind of law. But it doesn’t need to be a legal responsibility for it to feel like it’s something you really ought to do.
DN: It seems like pressure to do this is already happening. In your own essay in the book, you note that Anne Wojcicki, the CEO of 23andMe, told a reporter in 2016, “Genetic testing is a responsibility if you are having children.”
JJ: There’s a balance between the parenting experience of acceptance and celebration and being open, and the parenting experience of the obligations and responsibilities you have to give your child the best chance in life, however you define it.
That tension is in the book, and it’s a real tension — the implications at a societal level for the use of gene editing or other technology to eliminate disability, and what we lose and what we gain. It’s a really hard conversation, and it’s a really hard conversation to have in the United States because of abortion, which can really cloud the discussion. Being able to talk about this is a real challenge, and some of these essays do a good job of opening up that conversation in a way that isn’t immediately about pro-life or pro-choice debate.
DN: Is anyone alive today going to see significant genome editing in humans or are we several generations away from that?
JJ: I think there will be some treatments; I’m crossing my fingers and hoping something good will come for people with really devastating genetic diseases, such as Huntington’s.
For the rest of us, the question is contained in the title of the book: Does this technology enable us to live better lives at the end of the day? And that’s a great question to be asking, rather than could it allow me to get some sort of genetic advantage in life. Human flourishing is at stake, not just safety. This is a conversation that doesn’t have easy answers, but is still worth having.
DN: What is the takeaway that you hope people gain from this collection of perspectives?
JJ: There’s more at stake in how we respond to technology like this than meets the eye.
Even though the FDA has not approved the use of this in embryos, and there’s a law that even prohibits them from considering it, this introduces into our imagination, and our ways of ordering the world, the prospect that genes can be altered and differences can be normalized or changed.
Long before people were sending their spit samples to 23andMe, we were having conversations about destiny and fate, and now we have the notion that there is this technology that can make changes to future persons or changes to existing persons, and it changes how we think about what it means to be a parent, or a person in the world.
This tension is very profound, but it’s also a very ordinary tension that we all are dealing with, right? The body that we have, how much do we accept it and how much do we alter it? People make very different decisions about that, and this extends the conversation to the level of the genome.