The Gene Machine: How Genetic Technologies are Changing the Way We Have Kids—and the Kids We Have

Mar 23, 2017

Scientists already have the ability to edit genes to treat hereditary diseases, and to screen in vitro embyros for such diseases. Where will these evolving technologies lead and what are the ethical issues involved? For example, will "designer babies" increase the already growing divide between rich and poor? How do we regulate this new frontier?

JOANNE MYERS: Welcome to this podcast, which is coming to you from the Carnegie Council in New York City.

Our guest today is Bonnie Rochman, an award-winning journalist, former health and parenting columnist for, and staff writer for TIME magazine. Bonnie has also written for The New York Times Magazine, The Wall Street Journal, MIT Technology Review, Scientific American, and O The Oprah Magazine. Together we will be discussing her recently published book entitled The Gene Machine: How Genetic Technologies are Changing the Way We Have Kids—and the Kids We Have. In it she delves into questions that are being raised among geneticists, physicians, and other scientists about the benefits, pitfalls, and dangers of these genetic advances.

Bonnie, thank you for joining us.

BONNIE ROCHMAN: Thank you so much for having me.

JOANNE MYERS: For those listeners who may not be familiar with genetic technologies, could you begin by telling us, what is genetic engineering?

BONNIE ROCHMAN: Genetic technology and genetic engineering are two very different terms. I will start out by telling you a little bit about genetic technology. Genetic technology can range from all sorts of genetic tests that can enable you to peer deeper inside your genome—your genetic code—all the way to technologies that are now being employed to allow physicians, scientists, and researchers to try and eliminate or mitigate symptoms of a disease.

So a genetic technology can be a blood test, while something like genetic engineering often has, I would say, more negative implications. It tends to raise the specter of so-called "designer babies," because the term "engineering" indicates that you are trying to create or trying to build or trying to mold something in a certain way. So generally when we talk about genetic engineering it's got a little bit of a nefarious undertone, whereas genetic technology tends to be a lot brighter, a lot more optimistic, and certainly much more all-encompassing.

JOANNE MYERS: If you were going to start testing people, what type of diseases could be treated with human gene-editing technologies because that would be the more positive path, rather than the nefarious one you spoke about?

BONNIE ROCHMAN: We can talk a little bit more about the "nefarious" nature of genetic engineering in a few minutes if you're interested. But there are certainly many ways to use and to apply genetic technology that would be considered genetic editing or genetic engineering that are wonderful and really not controversial and are really all about curing, or certainly treating, disease.

To more specifically address what you asked me, gene editing can be used in a whole bunch of different ways. But one thing that companies are currently looking at is to treat a rare hereditary sort of blindness, or a disease called Duchenne muscular dystrophy, which is more common in boys and is a very debilitating disease that leads to death often by the mid-20s. It is a muscle-wasting disease, essentially. What scientists are trying to do is to hone in on the particular genes that need fixing and address just those genes.

There are all sorts of amazing technologies, and the one that is most in the news is called clustered regularly interspaced short palindromic repeats (CRISPR). In some situations it is a search-and-replace technology. But you're not always replacing; you may be adding; you may be smoothing something over. So "search-and-replace" is not always the most accurate way to describe it, but it's sort of like miraculous scissors. You can go in, snip out the part that is not working, and patch it over or replace it with something or remove something that needs to be removed. So it's almost like genetic copy editing.

JOANNE MYERS: How will this affect future generations? If you can enter and take care of the embryo in utero in, say, that one specific child? What will it do to future generations?

BONNIE ROCHMAN: Right. That is what makes this conversation so fraught. There are two main sorts of editing: germline editing and somatic cell editing. Germline editing refers to egg, sperm, or embryos; those are germ cells. Somatic cells are all the other cells, so most of the cells in your body.

If you edit an embryo or an egg or a sperm, those are considered germline edits and will be passed on to future generations. If you edit somatic cells, the cells in a person who is already here on Earth, existing, and let's say they have a disease and you're trying to address that disease, those particular genetic changes will not be passed on to another generation.

So when we're talking about somatic cell editing, that is really what most of the genetic technology companies that are using this CRISPR technology that we just talked about are focusing on. The CEO of one of the major companies, called Editas, which is headquartered in Cambridge, Massachusetts, has told me that there are so many people out there who are alive and have disease, there is basically so much disease that is already out there in people that needs to be addressed, that there is really no need at this point to go into the more ethically fraught domain of trying to edit embryos.

There is actually technology that in quite a few situations can be helpful if there is genetic disease in a family. It's called preimplantation genetic diagnosis (PGD). So if you know that you have a genetic disease that runs in your family, you can create embryos via in vitro fertilization (IVF) in the same way that any couple would go about the IVF process if they were having trouble getting pregnant.

Then those embryos would be analyzed for the presence or absence of the particular disease mutation that you are looking to eliminate. The embryos that have that disease mutation—for example, a fatal disease in childhood, such as Tay Sachs disease, which is more common in the Ashkenazi Jewish community, the Jews who descend from Eastern European countries as well as the Irish community—if you are looking to eliminate the possibility of having a child with Tay Sachs, you can create embryos, look for the Tay Sachs mutation, and then discard or set aside those embryos that have it and implant only the embryos that are considered healthy, that don't have that mutation.

So it's much simpler, as you might imagine, to basically look in a row of embryos and say, "Oh, these ones, these embryos have Tay Sachs, let's not use these embryos; let's only use the embryos that don't have Tay Sachs," as opposed to taking an embryo that does have Tay Sachs and trying to pick out the particular genetic mutation because, of course, the concern with gene editing in embryos is that we don't exactly know what messing around with genes will do. It may achieve the desired effect, and it could eliminate a disease. However, the concern is: Well, what else could it do? Will there be other side effects that we are not aware of?

So you can imagine that when you're talking about eggs or sperm which will grow into babies or embryos, then the concern is certainly heightened, too. People will think, Oh, we're playing around with embryos, and we don't exactly know what the end result will be.

JOANNE MYERS: Do you think that this genome editing is just an incremental step forward, or does it represent a disruptive technology capable of overthrowing the current orthodoxy and leading to the slippery slope of eugenics?

BONNIE ROCHMAN: That's a loaded question, and it's also a very complex question. I don't think it's an incremental technology. It is an amazing scientific feat that we are able to edit embryos.

Now, there is a huge and very significant caveat: We are only in the beginning stages of being able to do this. We don't know exactly how it works. There have been scientists who have been working on this. It doesn't always work as planned, hence the concern. In some cases, some of these edits will be reflected in some cells and not in others, and of course that process would need to be perfected because it's not enough to only have changes reflected in a certain number of cells.

As far as whether it could lead to eugenics, of course the concern is that although gene editing in embryos is currently focused solely on the eradication of disease, what exactly would be next? It is naïve to think that some people in our society would not seize upon this technology to say, "Hey, can we build a better baby, and how can we do that?"

It is very difficult to say, "Yes, let's do that. Let's build the next baby Einstein or let's engineer the next Simone Biles." The reason it is so difficult to do this is because there is not one single gene that codes for brilliance, for intelligence, nor is there one single gene that codes for incredible athletic gymnastic ability. Because of that it is not an on-off switch.

However, what there is concern about, and the thing to really be watching in the near future, is—let's circle back to Duchenne muscular dystrophy, the disease that I mentioned that is a muscle-wasting disease. If we are able to figure out how to strengthen muscle fibers, it stands to reason—or at least it would not be incredibly surprising—if some scientist would say, "Oh, okay. Well, we now know how to strengthen muscle fibers in a sick person. Can we then co-opt that technology for healthy people? Can we strengthen muscle fibers in healthy people? Can we strengthen muscle fibers in embryos, and will that then make my child more athletic?"

Those are the kinds of things that are of concern to many people. Could that lead to a society in which eugenics is more normalized? I suppose in theory it could.

However, there is one really important distinction. Eugenics of yore was state-sponsored, and this sort of what some people have called "the new eugenics" would be something that parents would choose if this technology were available. I cannot imagine or envision a world in which something like this would be state-sponsored.

JOANNE MYERS: Are there any guidelines out there now for humane genomic engineering? There are so many ethical implications, and since standards vary from country to country and from continent to continent, I was just wondering whether or not there are any guidelines that will help scientists going forward?

BONNIE ROCHMAN: Yes, there are. People are looking at this closely. In February there was a report from the National Academy of Medicine and the National Academy of Sciences which included several international organizations as well, including the United Kingdom and China, which is very significant because Chinese scientists have been at the forefront of doing a lot of this research on embryos and gene editing. They set very specific guidelines about what is okay and what is acceptable.

Until that report in February, there had been a lot of hemming and hawing, and basically there was a pretty firm stance away from editing of embryos. Then in February the report sort of tacked and said, "You know what? In cases where parents want to have a child who is genetically related to them and there is no other way for them to conceive a healthy child," where they would be speaking of avoiding a very serious disease or averting a severe disability, so only in those situations would it be okay to edit eggs, sperm, or embryos.

Then there are, of course, all the additional caveats piled on top and safety guidelines. So, yes, there is certainly oversight, and there will continue to be oversight. I really think that that is the key to this whole rollout of genetic technology going smoothly. Because of course when it comes to future generations and to our children, people are impassioned and feel very strongly about how this should all work.

JOANNE MYERS: What about the variance in inequality? There are some people who can afford to be tested in advance, and others who cannot, who would benefit greatly, like those suffering from sickle cell anemia. Where does this come down in terms of guidelines in your thinking about the variance in inequality of people who can and cannot afford it?

BONNIE ROCHMAN: I definitely think that this technology is only going to serve to exacerbate socioeconomic inequity. When you think about it, of course this inequity already exists in so many aspects of our health care arena, even if you just looked at IVF, at in vitro fertilization, and who can afford that in the first place.

There are, I believe, about eight states that mandate insurance coverage; however, the majority of states do not. So you are setting up a dynamic where only infertile parents who are well-to-do are actually able to have a genetically related child.

It is the same sort of thing that is going to be playing out when it comes to gene editing of embryos. For sure the technology will be expensive. If we eventually get to the point where we are able to enhance embryos as opposed to using gene editing for therapeutic purposes, certainly only people of means would be able to do that.

JOANNE MYERS: Then genetic engineering could certainly permanently change our society.

BONNIE ROCHMAN: It certainly could, and that is really the importance of having these very eminent panels of scientists, bioethicists, researchers, and physicians really stay on top of this and set guidelines about what is appropriate and what is not appropriate, along with professional associations.

JOANNE MYERS: Yes, we want to make sure that we don't manipulate nature too far so that we aren't playing God.

BONNIE ROCHMAN: Yes, exactly. And there is a lot of debate, as you may imagine, about what does qualify as "playing God." What qualifies as playing God for one person, for another person is an obvious course of action.

For example, in my book I talk about using preimplantation genetic diagnosis to eliminate a BRCA or breast cancer mutation. Some people feel that that is playing God, whereas, for example, using that technology to eliminate a mutation that will result in a child dying, say, before kindergarten of a disease, that is not as controversial. No one wants to see a three or four-year-old child die. But when you're talking about something like breast cancer and you have a breast cancer mutation, that mutation does not necessarily mean 100 percent that you will even develop the disease over the course of your lifetime. It means that you are at significantly increased risk. So some people feel like that is playing God, that it is risk, it is not certainty.

And for example, with breast cancer there are other things that you can do. You could have a prophylactic mastectomy—that got a ton of attention several years ago when Angelina Jolie announced that she had done that. You can do increased surveillance. So there are things that you can do to mitigate your risk, or at least to stay on top of it and to really be much more aware. So some people feel like, "Oh, well you shouldn't create an embryo that doesn't have that mutation. That's playing God."

Even within families where some people have opted to use that technology and other people have opted to just have a baby and take their chances that the baby would inherit the breast cancer mutation, there is controversy, as some people feel like you're playing God and some people feel like you're just trying to give your child the best start in life possible.

JOANNE MYERS: Well, "Homo Deus" or Homo sapiens, either way, I think people are going to be arguing passionately. The science is coming, whether we like it or not, I guess, and somehow we all have to decide how to deal with it.

Bonnie, thank you so much for introducing us to this topic and for giving us some very profound ideas to think about. Thank you.

BONNIE ROCHMAN: Thank you so much for having me on.

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