Genome Editing – Are We Ready for Designer BABIES?

Dr. Ellen Jorgenson, Molecular Biologist, Citizen science advocate of Aanika Biosciences, Inc.

For 100 years we have been imagining it in science fiction, but we are now at the point where it may become everyday reality through new technologies such as CRISPR. Dr. Ellen Jorgensen who will discuss how creating designer babies will soon be possible and explore the social, economic and moral implications of editing our own evolution.

Full Interview Transcript

Kelly: Ellen, I’m so excited to have you here. if you tell us more about what CRISPR Technology is?

Dr. Ellen Jorgensen: I think this this the first thing to say flat out is this is not anywhere near ready for prime time.

the way CRISPRworks is there’s an enzyme called Cas9 and then there’s a small piece of nucleotide similar to D.N.A. something called R.N.A. that has a pattern of letters on it and we can artificially manufacture whatever pattern we want and this means we can send it to any target we want and this is something new. We’ve always been able to do genetic engineering, but we never been able to do something really precise like go in and get it just one gene, it’s actually been called a word processor for genomes, it’s that powerful. You can delete a letter, you can add a letter, you can take a whole part out, you can put a whole part in. That’s the way the system works so it makes a damage point and then the repair systems come in and we sort of hijack them and convince them to make the repair that we want and this is opening up a whole new can of worms that we sort of been talking about this in science fiction for years. If you’ve ever seen movies like Gattaca.

Kelly: Oh yeah, it reminded me of Gattaca.

Dr. Ellen Jorgensen: Societies where there are people who are edited to be perfect and people who are not. But it’s always been something like you know the artificial intelligence that takes over everyone, that’s always like ten years out into the future, it’s never now. Well, guess what? It’s now. we have had the first incidence of somebody using it to edit a human baby and let me just say that the other half of the technology that you need to know is that in order for it to work you have to get it inside a cell and this is fairly difficult when you’re talking about an adult person. That’s one of the reasons why cancer treatment is so difficult because you have to target it only to the cancer cells. But, in this case if you have an embryo, which is only you know maybe sixteen cells or something like that, eight cells, in a petri dish you can reach all those cells and load this technology into them. So, it’s nobody seems to argue with the idea that if someone is born with cystic fibrosis that you may we want to go in and treat their lung cells to make them healthy again, so they can breathe and they’ll live but what about treating that person as an embryo and snipping that gene completely out and replacing it with a good gene. That’s where it gets a little bit dicey.

Kelly: Yeah, it’s frightening. where is this happening? Has someone actually edited a human embryo already?

Dr. Ellen Jorgensen: In China. So, the Chinese government has made a big push to be a leader in the biotech area in many different areas not just this. They’ve pumped a lot of money into research, they’ve given scientists large grants, they’ve built huge research institutions and they’re bound and determined to challenge the United States as the leader in biotech research. And as part of this, they have had a very robust program in human genetics, and they’ve run studies like trying to find the genetic basis of intelligence.

Things that have all sorts of moral implications that in their government philosophical view anything that would help the population be better healthier is on the table. So, it’s not really coming from the Judeo-Christian tradition of you know people are perfect the way they are and they shouldn’t be meddled with and so viewpoints around the world differ a wildly on stuff like this and we have to realize that as Americans that the viewpoint isn’t always the same in other parts of the world. Nevertheless, this caused international fear, the investigator who did it, did the procedure on embryos from parents where the father was infected with HIV and the mother was not.

Dr. Ellen Jorgensen: the fetus actually had a fairly low chance of being infected with AIDS but what he decided to do was change the genetics and it turned out to be twin girls. Changed the genetics in the embryos such that, the AIDS virus couldn’t develop in them and that meant changing a receptor on white blood cells. That is the main point of attack for the AIDS virus, so not only was it something that was done in a human being for the first time but it was not a desperate medical necessity and I think that was another thing that was disturbing about it, was that it was more of a prophylactic or a preventative. a lot of people were also offended by the fact that they didn’t think it was particularly medically necessary.

Nevertheless, the scientists went ahead and did the experiment and we are now kind of in a stage where more and more is coming out about who knew about the experiment, where it was discussed, what was the role of the Chinese government, and it’s still not completely clear. What did happen was the scientist I think expected to really be lauded and praised for this effort and had planned to announce it at this large international meeting on genetically genetic engineering of humans, which was you know about not just technologies but also morality and ethics and social implications and things like that and what happened was the news was leaked prior to that and when he got up and gave his presentation he was universally condemned.

Kelly: Wow.

Dr. Ellen Jorgensen: And so, China immediately issued a statement saying that it was done without their blessing and that the investigator had violated their rules and regulations and that steps were being taken and he actually disappeared for a while.

Kelly: Oh, wow.

Dr. Ellen Jorgensen: He was under some sort of house arrest and you know, I’m not quite sure what is eventual fate is going to be but to me it was almost as if China was waiting to see how the world reacted and when it reacted negatively it immediately backed away. But it is coming out that the Chinese government really may have helped fund this and he certainly discussed it with a number of American researchers before he did the research and according to them, they all advised him not to do it. So, this is spurring China to propose new genetic regulations and all sorts of other stuff but it’s really like the horse has left the barn at this point.

I just saw a report where it said that it actually might affect the intelligence of these two little girls.

Kelly: The ones that were edited?

Dr. Ellen Jorgensen: Yeah, because that gene has been somehow linked to greater intelligence or something like that so you know it really is so irresponsible to experiment on a human without many – many – many studies in related species like monkeys and it just seems like people are so enamored with this technology and certainly it could do a tremendous amount of good. Imagine completely wiping out diseases, genetic diseases like devastating ones like Huntingtins or cystic fibrosis which is how most scientists are seeing this.

Kelly: Right.

Dr. Ellen Jorgensen: But then you also have the specter of course of eugenics because where do you draw the line and there was a wonderful cartoon that I saw and I can’t remember what the source was and I haven’t been able to find it but it’s a woman talking to a scientist, who’s the scientist is so happy saying, we have this technology and now mankind will never have to suffer again from all of these terrible genetic disorders, we’re going to completely eliminate all of them. For instance, no one will ever have to be you know be born blind or deaf again and she says, so like Helen Keller and he says, and no one will ever suffer from neurological disorders and she says, oh like Stephen Hawking. And he says, well no one will ever suffer from some of these psychological disorders that are now turning out to be genetic, things like schizophrenia and she says, like since Vincent Van Gogh. She named all of these people in history who certainly suffered from whatever the genetic disorder was but on the other hand contributed just enormous amounts to society and they hadn’t had those hurdles to overcome, the question is always – always, would they have made the same contribution? Would they have been the same people?

To make the choice to kind of cut off the ends of the bell curve. So, if you think of the average person, with an average intelligence, an average ability for athletics and creativity and everything and then you think of people that are on those two, way arms of the bell curve, there are people that are very disabled in certain areas and people that are just super naturally good at certain things.

Kelly: Right.

Dr. Ellen Jorgensen: If you start cutting off the ends and saying, well this is this is how we’re going to make everybody smarter, this is how we’re going to make everybody healthy then you get this this kind of monotone society and it is, danger in itself. I mean, you never, you don’t want anyone to suffer but it’s a tough call, it really is.

Kelly: we’re not in danger of this becoming a prevalent thing, where people are going to start designing and editing babies.

Dr. Ellen Jorgensen: Well it’s an interesting thought experiment because certainly the technology is not freely available and after this it’s going to be even more carefully regulated and watched. But I know that a lot of the professionals who do IVF are interested in it. There was a letter that was circulated saying that this technology shouldn’t be completely shut down, that it could provide a lot of, relieve a lot of needless suffering but then if you think about IVF, it’s a $30,000.00 procedure. So, not everyone can afford that, so do you create the static of society where in this case the people that can afford it, can afford to edit not just their child but their editing out their entire family line into the future forever.

Kelly: Right.

] Dr. Ellen Jorgensen: That gene is gone. It’s going to be passed on in a healthy form to all of their progeny. So, you know you may have whole dynasties of people that are healthy because they can afford it and whole dynasties people who are unhealthy because they can’t. The ones that can afford it is their responsibility of the government to step in. Or even what if something like common diseases, sickle cell anemia and the average sickle cell patient might go into the emergency room 300-400 times in their lifetime.

Kelly: Wow.

Dr. Ellen Jorgensen: Which is very expensive to the health care system. So, do you mandate that that person has to get a bone marrow transplant with cells that have been CRISPR’d and that’s actually a procedure that isn’t an embryo editing procedure but is something that is being tested in clinical trials right now and may become common.

Dr. Ellen Jorgensen: What if you had a child that turned out to have cystic fibrosis? Or what if you knew that for some reason there was a good chance that your child would have some sort of genetic like a condition that was dominant and the only way that you could fix it was through genetic engineering at the embryo level? Would you do it? Would you not?  Then what – what if it was just something that would give your child an advantage, make them smarter, make them stronger, whatever.

Kelly: Right.

Dr. Ellen Jorgensen: And one of the interesting things that I saw in that particular scenario that they mentioned was, well, would it effect your decision if everyone else was doing it? So…

Dr. Ellen Jorgensen: At what point if you did this without their knowledge or consent as an embryo or as a very small child, at what point would you sit the child down and say, you know you’ve been edited or whatever, would you ever tell them? I mean it’s a it’s a lot of sticky, sticky questions.

Kelly: Very, very scary to think that could be in the future at some point, that would be happening.

Dr. Ellen Jorgensen: there’s actually another set of children that was edited and haven’t been born yet.

Kelly: Is that right?

Dr. Ellen Jorgensen: I don’t know what the other edit is, I don’t think anyone has said what the other edit is. So, we’re going to have several children that scientists are going to be following very closely to see whether they develop normally, whether they you know in their lifetime develop cancers but of course that that’s a long – long range thing and that’s the thing that really makes everyone take one step back from this is, yes theoretically it could be a very safe procedure and it could be lifesaving but we don’t really know all the ramifications yet. So, really if you’re responsible, even if you’re for it you would really only advocate it in a case where there was absolutely no other option and the person was either going to die or suffer terribly or there was just some reason that there wasn’t any option and that it would be a state that would cause pain terrible pain and suffering if it were corrected. I think that’s where more most people are thinking.

Kelly: where would you like to see this whole thing go?

Dr. Ellen Jorgensen: I think I’d like to see it get rid of some of the really devastating genetic diseases. It’s particularly suited because we’ve never had a really good way to delete a gene before. Before this we used to have to create the sort of reverse copy kind of this reverse doppelganger of the gene that would create something in the cell that the cell itself would destroy. But in this case you can literally go in with this pair of molecular scissors and snip that gene out and Huntington’s disease is one of those diseases where there’s a gene that makes a protein, that’s a very bad protein and causes all these problems and there’s really no way you can just put a good gene in and fix it, you have to get rid of the bad one and so things like that. And heartbreaking diseases, like you know that or cystic fibrosis where you know you have a child born and you know they’re only going to live until twenty-one on average, which you know have it’s awful. It’s certainly I’m all for trying to use it in in people, as adults because you have to you have to make the distinction between, if you edited an embryo that means every cell in the embryo gets edited including the sperm and the egg.

Kelly: One part of it, the whole thing?

Dr. Ellen Jorgensen: You can’t really edit one part of an embryo. If it’s at the stage because we’re talking about when it’s just a little tiny ball of cells and the idea is you don’t want what they call mosseas, you don’t want some cells to have it and other cells not because you don’t really, you can’t really tell what that cells going to become, you know? Is it going to become an arm? Is it going to become a nose? So, you want to edit all the cells and you when you do that the cells that become the sperm and the egg get edited to and so the edit is passed on. So, that’s called Germ Line Editing and that’s what we’re talking about here. What’s called Somatic Cell Editing, is what people are talking about in terms of treating adults for cystic fibrosis or bone marrow transplants with edited cells for people that have sickle cell because that’s not, that’s only going to edit cells that that are treated. So, in cystic fibrosis you could imagine spraying something into the lung and hoping that you could make a formulation that would get the CRISPRinto the lung cells and edit them, but that person will still have children that you know will carry a cystic fibrosis allele. So, but nobody seems to have an issue with that because that’s just like any other treatment really. It’s just like gene editing, where they’ve had success with hereditary blindness if they inject the gene into the eye, that to take and correct hereditary blindness in some cases.

Kelly: Oh, wow.

Dr. Ellen Jorgensen: So, the controversial use, we’re really talking about here is taking an embryo and editing it as a germ line and having that being passed down, which you know several major religions forbid that expressly.

Kelly: Yeah, yeah. I mean some really scary thing to think about you know how like if that would change our society in general if we start editing people because like you mentioned the greatest people have these disabilities or they’re not perfect and it just you would have a homogenous society and would just get a little weird.

Dr. Ellen Jorgensen: Well, it’s a slippery slope when you’re not really sure. So, for example one of the things that opened my eyes was I was at a conference at the University of Colorado at Boulder and it’s a conference that the students at the university participate in as volunteers and so I had a student that was leading me from one part of this very complicated campus to another where I was supposed to speak, she was being a host and she had this vestigial arm and at one point she looked at me and she said you know I’m really sick and tired of people talking about editing me out of the population. She said this doesn’t bother men, this is me, this is part of my identity, this is the way I am and that really made a big impression on me.

Kelly: I agree. I agree, it would cause, if everyone started doing it then you would all think, well if my kid isn’t them, how are they going to happen, how are they going to grow up, if they don’t, you know you if there’s all these question that would come up

Dr. Ellen Jorgensen: It’s also going to be hard if they ever perfect this to resist the temptation to give a child an advantage. Everybody has their own hopes for their own child and it’s very difficult to think about not using something that could make your child have a smoother road in life. So, it’s going to be very interesting and regulations, always technology is moving so fast these days regulations are always lagging behind. So, it’s very unclear what the regulations are going to be and from what I understand IVF clinics operate in a very gray area because they’re not really doing research, it’s not funded by the government. A lot of what is allowed and not allowed in the United States is limited at the level of government funding. So, you can’t do human embryo research without going through incredibly rigorous process but just like stem cells, when it was forbidden to use embryonic stem cell the state of California just made its own pool of money and funded research.

Kelly: Oh, interesting.

Dr. Ellen Jorgensen: So, you know a lot of these things aren’t illegal, they’re just un-fundable then you get some private person with enough money or you get enough of a movement to create a pool of money it may change, though I think that this has been a wakeup call to the entire world really.

Kelly: Right, well it sounds like hope that will slow down thing and we won’t be living in a Gattaca society any time soon.

Dr. Ellen Jorgensen: well but it’s been done and that you know we in the United States have no control over what people in the rest of the world do and there are places in the world that are essentially still almost the wild west in terms of regulation on this. So, they tend not to be as technically competent but that could change with, this is an era where information and technology pass over international borders extremely quickly and people fly all over the world and get educated so you can’t rely on the technology being confined to Western industrialized nations or nations that have really strong abilities to police these things.

Kelly: this has been really eye-opening

Dr. Ellen Jorgensen: Tryand think through all of the societal implications of something like that and join the conversation because I think the people that have invented this technology have been very scrupulous about trying to engage everyone in the conversation.

Dr. Ellen Jorgensen: And we live in a society where you know we have people that do nothing but do science all day and we’re supporting them with our government funding, our tax dollars for the most part and that means that we really have a stake in deciding how the research should play out and I think everybody should be as vocal as possible about it.

Kelly:  This is when it gets kind of scary because I feel like it could be soon like you said.

Dr. Ellen Jorgensen: Yeah, I mean the hurdles are technical and we’ve always been really good at solving technical hurdles and the fact that this technology and this is something that’s maybe worth mentioning, the fact gone on from an experiment in a test tube, which is the first like a piece of D.N.A. and the system, no cell even and it edited a naked piece of D.N.A. in 2012…

Kelly: 2012?

Dr. Ellen Jorgensen: 2012. And so, from that which was only 6 years ago to editing an actual human baby in six years the trajectory of the progress of this sort of stuff is just insane and it’s unlike anything that we’ve ever seen before. So, I think this is, it’s due to a lot of different factors — the spread of information, international cooperation, artificial intelligence, so a lot of high throughput experiments and computer assisted experiments. It’s really a different world where progress is happening very very fast and it’s very hard for the general public to keep up with it, but I think we really have to.

 

 

About Dr. Ellen Jorgenson

Dr. Jorgensen is the Chief Science Officer at Carverr, Inc., a biotech startup that uses DNA-barcoded probiotics to track and trace products through supply chains. She passionate about increasing science literacy in both student and adult populations, particularly in the areas of molecular and synthetic biology. In 2017, Fast Company magazine named her one of their Most Creative Leaders in Business. Dr. Jorgensen’s two TED talks (Biohacking: You Can Do It Too and What You Need To Know About CRISPR) have received over two million views.. For more information, visit: www.biotechwithoutborders.org.

Genome Editing – Are We Ready for Designer BABIES?

Dr. Ellen Jorgenson, Molecular Biologist, Citizen science advocate of Aanika Biosciences, Inc.

For 100 years we have been imagining it in science fiction, but we are now at the point where it may become everyday reality through new technologies such as CRISPR. Dr. Ellen Jorgensen who will discuss how creating designer babies will soon be possible and explore the social, economic and moral implications of editing our own evolution.

Full Interview Transcript

Kelly: Ellen, I’m so excited to have you here. if you tell us more about what CRISPR Technology is?

Dr. Ellen Jorgensen: I think this this the first thing to say flat out is this is not anywhere near ready for prime time.

the way CRISPRworks is there’s an enzyme called Cas9 and then there’s a small piece of nucleotide similar to D.N.A. something called R.N.A. that has a pattern of letters on it and we can artificially manufacture whatever pattern we want and this means we can send it to any target we want and this is something new. We’ve always been able to do genetic engineering, but we never been able to do something really precise like go in and get it just one gene, it’s actually been called a word processor for genomes, it’s that powerful. You can delete a letter, you can add a letter, you can take a whole part out, you can put a whole part in. That’s the way the system works so it makes a damage point and then the repair systems come in and we sort of hijack them and convince them to make the repair that we want and this is opening up a whole new can of worms that we sort of been talking about this in science fiction for years. If you’ve ever seen movies like Gattaca.

Kelly: Oh yeah, it reminded me of Gattaca.

Dr. Ellen Jorgensen: Societies where there are people who are edited to be perfect and people who are not. But it’s always been something like you know the artificial intelligence that takes over everyone, that’s always like ten years out into the future, it’s never now. Well, guess what? It’s now. we have had the first incidence of somebody using it to edit a human baby and let me just say that the other half of the technology that you need to know is that in order for it to work you have to get it inside a cell and this is fairly difficult when you’re talking about an adult person. That’s one of the reasons why cancer treatment is so difficult because you have to target it only to the cancer cells. But, in this case if you have an embryo, which is only you know maybe sixteen cells or something like that, eight cells, in a petri dish you can reach all those cells and load this technology into them. So, it’s nobody seems to argue with the idea that if someone is born with cystic fibrosis that you may we want to go in and treat their lung cells to make them healthy again, so they can breathe and they’ll live but what about treating that person as an embryo and snipping that gene completely out and replacing it with a good gene. That’s where it gets a little bit dicey.

Kelly: Yeah, it’s frightening. where is this happening? Has someone actually edited a human embryo already?

Dr. Ellen Jorgensen: In China. So, the Chinese government has made a big push to be a leader in the biotech area in many different areas not just this. They’ve pumped a lot of money into research, they’ve given scientists large grants, they’ve built huge research institutions and they’re bound and determined to challenge the United States as the leader in biotech research. And as part of this, they have had a very robust program in human genetics, and they’ve run studies like trying to find the genetic basis of intelligence.

Things that have all sorts of moral implications that in their government philosophical view anything that would help the population be better healthier is on the table. So, it’s not really coming from the Judeo-Christian tradition of you know people are perfect the way they are and they shouldn’t be meddled with and so viewpoints around the world differ a wildly on stuff like this and we have to realize that as Americans that the viewpoint isn’t always the same in other parts of the world. Nevertheless, this caused international fear, the investigator who did it, did the procedure on embryos from parents where the father was infected with HIV and the mother was not.

Dr. Ellen Jorgensen: the fetus actually had a fairly low chance of being infected with AIDS but what he decided to do was change the genetics and it turned out to be twin girls. Changed the genetics in the embryos such that, the AIDS virus couldn’t develop in them and that meant changing a receptor on white blood cells. That is the main point of attack for the AIDS virus, so not only was it something that was done in a human being for the first time but it was not a desperate medical necessity and I think that was another thing that was disturbing about it, was that it was more of a prophylactic or a preventative. a lot of people were also offended by the fact that they didn’t think it was particularly medically necessary.

Nevertheless, the scientists went ahead and did the experiment and we are now kind of in a stage where more and more is coming out about who knew about the experiment, where it was discussed, what was the role of the Chinese government, and it’s still not completely clear. What did happen was the scientist I think expected to really be lauded and praised for this effort and had planned to announce it at this large international meeting on genetically genetic engineering of humans, which was you know about not just technologies but also morality and ethics and social implications and things like that and what happened was the news was leaked prior to that and when he got up and gave his presentation he was universally condemned.

Kelly: Wow.

Dr. Ellen Jorgensen: And so, China immediately issued a statement saying that it was done without their blessing and that the investigator had violated their rules and regulations and that steps were being taken and he actually disappeared for a while.

Kelly: Oh, wow.

Dr. Ellen Jorgensen: He was under some sort of house arrest and you know, I’m not quite sure what is eventual fate is going to be but to me it was almost as if China was waiting to see how the world reacted and when it reacted negatively it immediately backed away. But it is coming out that the Chinese government really may have helped fund this and he certainly discussed it with a number of American researchers before he did the research and according to them, they all advised him not to do it. So, this is spurring China to propose new genetic regulations and all sorts of other stuff but it’s really like the horse has left the barn at this point.

I just saw a report where it said that it actually might affect the intelligence of these two little girls.

Kelly: The ones that were edited?

Dr. Ellen Jorgensen: Yeah, because that gene has been somehow linked to greater intelligence or something like that so you know it really is so irresponsible to experiment on a human without many – many – many studies in related species like monkeys and it just seems like people are so enamored with this technology and certainly it could do a tremendous amount of good. Imagine completely wiping out diseases, genetic diseases like devastating ones like Huntingtins or cystic fibrosis which is how most scientists are seeing this.

Kelly: Right.

Dr. Ellen Jorgensen: But then you also have the specter of course of eugenics because where do you draw the line and there was a wonderful cartoon that I saw and I can’t remember what the source was and I haven’t been able to find it but it’s a woman talking to a scientist, who’s the scientist is so happy saying, we have this technology and now mankind will never have to suffer again from all of these terrible genetic disorders, we’re going to completely eliminate all of them. For instance, no one will ever have to be you know be born blind or deaf again and she says, so like Helen Keller and he says, and no one will ever suffer from neurological disorders and she says, oh like Stephen Hawking. And he says, well no one will ever suffer from some of these psychological disorders that are now turning out to be genetic, things like schizophrenia and she says, like since Vincent Van Gogh. She named all of these people in history who certainly suffered from whatever the genetic disorder was but on the other hand contributed just enormous amounts to society and they hadn’t had those hurdles to overcome, the question is always – always, would they have made the same contribution? Would they have been the same people?

To make the choice to kind of cut off the ends of the bell curve. So, if you think of the average person, with an average intelligence, an average ability for athletics and creativity and everything and then you think of people that are on those two, way arms of the bell curve, there are people that are very disabled in certain areas and people that are just super naturally good at certain things.

Kelly: Right.

Dr. Ellen Jorgensen: If you start cutting off the ends and saying, well this is this is how we’re going to make everybody smarter, this is how we’re going to make everybody healthy then you get this this kind of monotone society and it is, danger in itself. I mean, you never, you don’t want anyone to suffer but it’s a tough call, it really is.

Kelly: we’re not in danger of this becoming a prevalent thing, where people are going to start designing and editing babies.

Dr. Ellen Jorgensen: Well it’s an interesting thought experiment because certainly the technology is not freely available and after this it’s going to be even more carefully regulated and watched. But I know that a lot of the professionals who do IVF are interested in it. There was a letter that was circulated saying that this technology shouldn’t be completely shut down, that it could provide a lot of, relieve a lot of needless suffering but then if you think about IVF, it’s a $30,000.00 procedure. So, not everyone can afford that, so do you create the static of society where in this case the people that can afford it, can afford to edit not just their child but their editing out their entire family line into the future forever.

Kelly: Right.

] Dr. Ellen Jorgensen: That gene is gone. It’s going to be passed on in a healthy form to all of their progeny. So, you know you may have whole dynasties of people that are healthy because they can afford it and whole dynasties people who are unhealthy because they can’t. The ones that can afford it is their responsibility of the government to step in. Or even what if something like common diseases, sickle cell anemia and the average sickle cell patient might go into the emergency room 300-400 times in their lifetime.

Kelly: Wow.

Dr. Ellen Jorgensen: Which is very expensive to the health care system. So, do you mandate that that person has to get a bone marrow transplant with cells that have been CRISPR’d and that’s actually a procedure that isn’t an embryo editing procedure but is something that is being tested in clinical trials right now and may become common.

Dr. Ellen Jorgensen: What if you had a child that turned out to have cystic fibrosis? Or what if you knew that for some reason there was a good chance that your child would have some sort of genetic like a condition that was dominant and the only way that you could fix it was through genetic engineering at the embryo level? Would you do it? Would you not?  Then what – what if it was just something that would give your child an advantage, make them smarter, make them stronger, whatever.

Kelly: Right.

Dr. Ellen Jorgensen: And one of the interesting things that I saw in that particular scenario that they mentioned was, well, would it effect your decision if everyone else was doing it? So…

Dr. Ellen Jorgensen: At what point if you did this without their knowledge or consent as an embryo or as a very small child, at what point would you sit the child down and say, you know you’ve been edited or whatever, would you ever tell them? I mean it’s a it’s a lot of sticky, sticky questions.

Kelly: Very, very scary to think that could be in the future at some point, that would be happening.

Dr. Ellen Jorgensen: there’s actually another set of children that was edited and haven’t been born yet.

Kelly: Is that right?

Dr. Ellen Jorgensen: I don’t know what the other edit is, I don’t think anyone has said what the other edit is. So, we’re going to have several children that scientists are going to be following very closely to see whether they develop normally, whether they you know in their lifetime develop cancers but of course that that’s a long – long range thing and that’s the thing that really makes everyone take one step back from this is, yes theoretically it could be a very safe procedure and it could be lifesaving but we don’t really know all the ramifications yet. So, really if you’re responsible, even if you’re for it you would really only advocate it in a case where there was absolutely no other option and the person was either going to die or suffer terribly or there was just some reason that there wasn’t any option and that it would be a state that would cause pain terrible pain and suffering if it were corrected. I think that’s where more most people are thinking.

Kelly: where would you like to see this whole thing go?

Dr. Ellen Jorgensen: I think I’d like to see it get rid of some of the really devastating genetic diseases. It’s particularly suited because we’ve never had a really good way to delete a gene before. Before this we used to have to create the sort of reverse copy kind of this reverse doppelganger of the gene that would create something in the cell that the cell itself would destroy. But in this case you can literally go in with this pair of molecular scissors and snip that gene out and Huntington’s disease is one of those diseases where there’s a gene that makes a protein, that’s a very bad protein and causes all these problems and there’s really no way you can just put a good gene in and fix it, you have to get rid of the bad one and so things like that. And heartbreaking diseases, like you know that or cystic fibrosis where you know you have a child born and you know they’re only going to live until twenty-one on average, which you know have it’s awful. It’s certainly I’m all for trying to use it in in people, as adults because you have to you have to make the distinction between, if you edited an embryo that means every cell in the embryo gets edited including the sperm and the egg.

Kelly: One part of it, the whole thing?

Dr. Ellen Jorgensen: You can’t really edit one part of an embryo. If it’s at the stage because we’re talking about when it’s just a little tiny ball of cells and the idea is you don’t want what they call mosseas, you don’t want some cells to have it and other cells not because you don’t really, you can’t really tell what that cells going to become, you know? Is it going to become an arm? Is it going to become a nose? So, you want to edit all the cells and you when you do that the cells that become the sperm and the egg get edited to and so the edit is passed on. So, that’s called Germ Line Editing and that’s what we’re talking about here. What’s called Somatic Cell Editing, is what people are talking about in terms of treating adults for cystic fibrosis or bone marrow transplants with edited cells for people that have sickle cell because that’s not, that’s only going to edit cells that that are treated. So, in cystic fibrosis you could imagine spraying something into the lung and hoping that you could make a formulation that would get the CRISPRinto the lung cells and edit them, but that person will still have children that you know will carry a cystic fibrosis allele. So, but nobody seems to have an issue with that because that’s just like any other treatment really. It’s just like gene editing, where they’ve had success with hereditary blindness if they inject the gene into the eye, that to take and correct hereditary blindness in some cases.

Kelly: Oh, wow.

Dr. Ellen Jorgensen: So, the controversial use, we’re really talking about here is taking an embryo and editing it as a germ line and having that being passed down, which you know several major religions forbid that expressly.

Kelly: Yeah, yeah. I mean some really scary thing to think about you know how like if that would change our society in general if we start editing people because like you mentioned the greatest people have these disabilities or they’re not perfect and it just you would have a homogenous society and would just get a little weird.

Dr. Ellen Jorgensen: Well, it’s a slippery slope when you’re not really sure. So, for example one of the things that opened my eyes was I was at a conference at the University of Colorado at Boulder and it’s a conference that the students at the university participate in as volunteers and so I had a student that was leading me from one part of this very complicated campus to another where I was supposed to speak, she was being a host and she had this vestigial arm and at one point she looked at me and she said you know I’m really sick and tired of people talking about editing me out of the population. She said this doesn’t bother men, this is me, this is part of my identity, this is the way I am and that really made a big impression on me.

Kelly: I agree. I agree, it would cause, if everyone started doing it then you would all think, well if my kid isn’t them, how are they going to happen, how are they going to grow up, if they don’t, you know you if there’s all these question that would come up

Dr. Ellen Jorgensen: It’s also going to be hard if they ever perfect this to resist the temptation to give a child an advantage. Everybody has their own hopes for their own child and it’s very difficult to think about not using something that could make your child have a smoother road in life. So, it’s going to be very interesting and regulations, always technology is moving so fast these days regulations are always lagging behind. So, it’s very unclear what the regulations are going to be and from what I understand IVF clinics operate in a very gray area because they’re not really doing research, it’s not funded by the government. A lot of what is allowed and not allowed in the United States is limited at the level of government funding. So, you can’t do human embryo research without going through incredibly rigorous process but just like stem cells, when it was forbidden to use embryonic stem cell the state of California just made its own pool of money and funded research.

Kelly: Oh, interesting.

Dr. Ellen Jorgensen: So, you know a lot of these things aren’t illegal, they’re just un-fundable then you get some private person with enough money or you get enough of a movement to create a pool of money it may change, though I think that this has been a wakeup call to the entire world really.

Kelly: Right, well it sounds like hope that will slow down thing and we won’t be living in a Gattaca society any time soon.

Dr. Ellen Jorgensen: well but it’s been done and that you know we in the United States have no control over what people in the rest of the world do and there are places in the world that are essentially still almost the wild west in terms of regulation on this. So, they tend not to be as technically competent but that could change with, this is an era where information and technology pass over international borders extremely quickly and people fly all over the world and get educated so you can’t rely on the technology being confined to Western industrialized nations or nations that have really strong abilities to police these things.

Kelly: this has been really eye-opening

Dr. Ellen Jorgensen: Tryand think through all of the societal implications of something like that and join the conversation because I think the people that have invented this technology have been very scrupulous about trying to engage everyone in the conversation.

Dr. Ellen Jorgensen: And we live in a society where you know we have people that do nothing but do science all day and we’re supporting them with our government funding, our tax dollars for the most part and that means that we really have a stake in deciding how the research should play out and I think everybody should be as vocal as possible about it.

Kelly:  This is when it gets kind of scary because I feel like it could be soon like you said.

Dr. Ellen Jorgensen: Yeah, I mean the hurdles are technical and we’ve always been really good at solving technical hurdles and the fact that this technology and this is something that’s maybe worth mentioning, the fact gone on from an experiment in a test tube, which is the first like a piece of D.N.A. and the system, no cell even and it edited a naked piece of D.N.A. in 2012…

Kelly: 2012?

Dr. Ellen Jorgensen: 2012. And so, from that which was only 6 years ago to editing an actual human baby in six years the trajectory of the progress of this sort of stuff is just insane and it’s unlike anything that we’ve ever seen before. So, I think this is, it’s due to a lot of different factors — the spread of information, international cooperation, artificial intelligence, so a lot of high throughput experiments and computer assisted experiments. It’s really a different world where progress is happening very very fast and it’s very hard for the general public to keep up with it, but I think we really have to.

 

 

About Dr. Ellen Jorgenson

Dr. Jorgensen is the Chief Science Officer at Carverr, Inc., a biotech startup that uses DNA-barcoded probiotics to track and trace products through supply chains. She passionate about increasing science literacy in both student and adult populations, particularly in the areas of molecular and synthetic biology. In 2017, Fast Company magazine named her one of their Most Creative Leaders in Business. Dr. Jorgensen’s two TED talks (Biohacking: You Can Do It Too and What You Need To Know About CRISPR) have received over two million views.. For more information, visit: www.biotechwithoutborders.org.

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