In this episode, we explore the idea of using this technology to heal an existing condition. What would that mean for the patients involved? Is there something about our genetics that is intrinsic to us, that we wouldn’t want to change?
Guests appearing in the episode:
Emily DeArdo
Emily DeArdo is a Catholic author whose first book, Living Memento Mori: My Journey Through the Stations of the Cross, was published by Ave Maria Press this past January. She was diagnosed with cystic fibrosis (CF), an incurable genetic disease, when she was 11 years old, and recently celebrated the fifteenth anniversary of her double lung transplant. You can find Emily at emilymdeardo.com
Transcript
It was the middle of the night and I was driving myself to the emergency room with a pair of burning lungs. I was trying to stay calm, to avoid panicking prematurely. But if it was what I thought it was, there was a very good chance that I could die. I was at the tail end of the first trimester of my second pregnancy. I had just returned home from a conference across the country. I should have. Better. I have a genetic predisposition to forming blood clots, which I found out the morning I was supposed to start my first job. I woke up and my entire leg was swollen and purple. I barely made it down the stairs on the way to the emergency room. I had a DVT a deep vein thrombosis. It's a type of clot that clogged the vein in my left hip. All of the blood was still flowing into my leg, but none of it could get out of my leg. They tested me for three different conditions to see what might have been the cause. I had all of them factor 5, Leiden and proteins C&S deficiencies each of these. Has its own increase risk of clotting. And so as it turns out, does pregnancy, and so does sitting for long periods of time like cross country travel. So when I got home from my trip and began coughing up blood, I knew a trip to the ER was in order. The attending informed me that I had bilateral pulmonary embolisms not one, but two clots in my lungs, one on each side, and they stayed in the hospital for several days while they got it under control. It's all a blur now, but I do remember the pain and the panic when I let myself cry to release the stress of it all and found that I couldn't breathe. I didn't have enough air to cry. Sobs wracked my body with fiery suffocation. The nurse came in with oxygen, and at. It's an experience, but Needless to say I never want to repeat again. Normally this condition is manageable with anticoagulants. During pregnancy, I give myself 2 injections in the stomach each day during that particular pregnancy, I hadn't started the shots yet. When I threw the clots. By my next pregnancy, I started the shots before I even told my husband I was pregnant. Now suppose the genetic editing technology was in place for these genes. Suppose I could just replace the broken bits of me with something healthy. What I want.
Due.
Yes, taking shots in the stomach twice a day is pretty uncomfortable and inconvenient. And yes, I've had not two or three, but four false alarm visits to the ER with real feeling, but ultimately imagined symptoms over the course of my last two pregnancies just out of the sheer anxiety of it all. Yes, my condition can be life threatening. The token driving on the freeway pregnancy is risky for me, but life is risky. Thinking about cutting out a piece of who I am, even a flawed piece. It's unnerving. I guess if I could be sure that cutting this bid out didn't take something else with it, something unanticipated. Well. Maybe I would be open to that, maybe. On this episode of Rave Nuas, I chat with another woman who, like me, lives with a genetic condition. She wishes she didn't have. We'll hear her story and get to know her thoughts on using this technology. I'm Samantha Stevenson. Welcome to the brave new US.
The message that we might be communicating is that we wouldn't want them around if we could have prevented them, we would. Have.
We don't talk about a pencil and say both inherently good. It's inherently evil.
We all are given this gift of suffering. This moment where God is asking us to walk closer with him, to cling to the cross.
It's pain and it's suffering and none. Of us get out of it.
We're at a point where we're trying to get to a perfect generation and insane amount of pressure on people to earn or deserve their place. That.
We're dealing with not simply shaping a life, but actually shaping the person.
We have the power to change our genetics.
But should we?
And how might using this power change who we really are? This is bioethics in the light of faith. Welcome to season 1. Brave new US.
I think we're Catholic, like all the way back to the flood.
This is Emily Diado, author of the Book Living Memento Mori. Memento Mori is an old Latin phrase from an evil Catholicism that means remember your death. It's been re popularized these days, thanks in large part to Twitter, but I also think because there's a kind of profound wisdom there. In an age where death and dying has been moved out of our homes and into institutions like hospitals and nursing care facilities, we need this reminder. It's a kind of universal wisdom that doesn't just resonate with Catholics. In his commencement speech to Stanford graduates, Apple founder Steve Jobs said something similar. He said, remembering that you are going to die is the best way that I know how to live. It keeps things in perspective and in talking. Emily. It is clear that she has had more than a healthy dose of perspective. She suffered epilepsy as a child right about when that started to go away. She began experiencing new symptoms until, at the age of 11, she was diagnosed with cystic fibrosis, a genetic disorder that affects the lungs and the digestive system.
To high school, I mean, I got sick, but I was able to go to school. I mean, I went to college. I. You know, went on choir tour with my friends and I had sleepovers. And you know, we we went to the beaches of family and I I could really do everything I wanted to do. It wasn't until I got. Really sick, you know, and it might almost, you know, eligible for transplant sick that my quality of life really took a nosedive.
Talking with Emily, it sounds like she's describing a condition that's more or less an inconvenience, but when she starts to list all the ways CF has affected her, this is serious. She's had a lung transplant, the effects of which have led to a loss of her hearing, some of which she's regained through the use of a cochlear implant. The drugs also threw her into early menopause, which means she can no longer conceive and carry children. Which would have been possible if challenging, before the transplant. Infertility was the price of staying alive. And yet, when I asked if she could go back and change it if she could, she says no.
Without my jeans being the way they are, I wouldn't be me. I'd be. Something else? I wouldn't be. Who I am. And I mean, I'm not a perfect person, of course. Nobody's perfect, but I like. Who I am I like. You know the life that that God has given me as a life that he apparently thinks I was fit to lead. And so to change, to go back in and, you know, change. It would be like well. Even if I didn't have any symptoms with and, there are things I've learned. And you know, the way the way I view the world or, you know, things like, OK, what's really important that have all been affected and molded because, you know, I've had the life that I've had.
She's grateful, ultimately, for the experience of adversity, precisely because of the adversity she's experienced and the person she's become as a result. A person's a perspective.
You know, like somebody cut you off in traffic. And am I make me mad because I'm a terribly impatient person. But you know, it's not going to ruin my whole day. You know, if I not if I don't graduate first in my class or if I don't get a certain GPA or if I don't get this promotion or whatever, it's it's not gonna ruin my life because it's like. Well, you know, worse things could be happening today.
This strikes a chord with me. I taught high school for eight years and in that time the rising anxiety of the students I. Taught. It was a slow boil. The temperature increased with every incoming class of freshmen. People have speculated lots of reasons why ours is the most anxious generation in history. The effects of social media on our brains, lack of sleep, less time spent with family or in the outdoors. All of those could of course, be contributing factors. But I wondered if Emily's wasn't a more fundamental insight. The more we focus on eliminating suffering on success is the attainment of leisure and an easy life. The less space we have to tolerate weakness and struggle. Given the choice, we actively avoid those things that for Emily, have made her resilient. And we try to shelter our children from those things as well. But Emily doesn't see the challenges she's faced as anything that set her apart.
Well, people generally make the assumption you know when you tell them that you have, you know, chronic illness and you have to do, you know, certain things. It's like ohh my. Gosh, I couldn't do that. And it's like well. Yeah, you could. It's really not. I mean, it's not brain surgery here.
Again, she sees her experience not as one of great suffering, but more of an inconvenience, like in high school, she was still inquire. Remember, it's her lungs that are affected by CF. It wasn't holding her back, although she did have to do her treatments on her trip. She makes it sound like another rite of passage, like wearing a mouth guard or braces. More involved may be than what the average person has to do, but normal.
You know, when we went on choir tour to Florida? When I was in high school, you know, I had to bring this stuff with me. So, you know, obviously in our hotel room, there were times in the morning we were getting ready and I would be there doing my nebulizers. And, you know, we'd have as I'm in the fridge and, you know, it was really just, this is what I have to do and. You know, to me it was no different than, you know, taking a shower, brushing your teeth. But I know some people. I mean, they really. Don't like it? They don't like that they have to do these things. And to me it was like well. I don't want to do. My math homework. But you know, even then it was like, well, I'm still alive. And I'd much rather be alive with. Yes. Then, you know. Not alive.
It's when we talk about having children with CF and Emily really gets going. It's true that the changes to her body after the transplant take biological children off the table now. But that wasn't always the case. Emily's been engaged before to a fiance who was a carrier. There was a high likelihood that their children might be affected by CF. Over 75 per cent and that didn't affect her decision. She still wanted, in her words, four or five kids.
You know, my life has had challenges in it, but it's been a pretty good life. So I figure, you know, I have the resources and I have the knowledge and I have the family support and you know, access to grade doctors and hospitals. So, you know, to me it was like, well, if it happens, it happens. If it doesn't, doesn't.
Even after everything she's been through, she doesn't mock the idea of a child. Her child experiencing something similar. It's not callous, though. Again, it comes down to perspective.
Everybody suffers. I mean, come on. We suffer. When? We get dumped. Or, you know, when we get teased on the playground or we fail the test? Or I mean life? Is full of. That stuff we don't get the job we want, you know, and you can't stop that from happening.
She resist the temptation to make hers a special kind of suffering. She points out that the impulse to quantify someone else's quality of life is not something new. Ever the author, she refers to Charles Dickens, A Christmas Carol.
Charles Dickens actually talks about that in A Christmas Carol and a part that never makes it into any adaptations, and he's talking to the ghost of Christmas present and the ghost of Christmas present says, you know, there are these children that you see that are poor and you think they'd be better off dead, but you really can't make that judgment.
Just as poverty can't make life not worth living, neither can someone's health conditions. Now you might be thinking this is a stretch. Is anybody really arguing that people like Emily are better off dead? Well, yes, at least they are arguing that people with cystic fibrosis would be better off if they had ever been born in this day and age when prenatal testing and abortion have become popular. Cocktail of treatments for ensuring that babies are Born Free of disabilities, the ones who are born. Both wrongful birth and wrongful life lawsuits are being filed by parents in courts of law against doctors for bringing their own children into the world.
My biggest problem about gene editing or anything like that is mostly with pregnancy and women who, you know, have other genetic testing in utero and then decide to abort their baby if you know it comes back that ohh the baby. Yes, yes. And that's really what bothers me the most in terms of what we do with genetic information.
How does that make you feel?
Well, I it usually just gets me really angry. There was an article, I think in New York magazine a couple years ago. Well, a woman basically wrote that she was showing the hospital she had a 2 year old was yet and she was suing the hospital for long for birth. And I just kept being article. I mean, you know, you see, get the pictures in this article. This year old. Toddler and then this beautiful little boy. And it's like, so basically, you're saying that you shouldn't exist. Look is there's something wrong with him. I mean, you know, most of the time when you read these stories, it's it's to prevent suffering and they try to make it sound really good. Like ohh. I do want my baby to suffer. Well, baby wants their baby to suffer. I mean, none of us are. Are, you know, thrilled about suffering you? Know that that's. Really, one of the big things I write about in my book, it's pain and it's suffering and none of us get out of it. So I think it's really short sighted to say, well, you know, I don't want my baby to suffer. So I'm gonna kill him. It really it. It just makes me angry because it's it's somebody making. And judgment all my life. On their child's life, based on their experience. It does sound overwhelming at first, like right now, because of all the post transplant. You know, I'm on Prednisone, which is a. Steroid. And it does a lot of good things. It makes my joints really happy. It does not make my blood sugar level happy. So now I have to give myself insulin and, you know, check my blood sugar and all that kind of stuff. I mean, am I thrilled that I'm giving myself insulin shots five times a day? No. What is it like? The end of the world? No. It's an inconvenience. You know I. Have a wonderful family. I have great friends. I've had a great life. And yeah, there's been other things that have happened that haven't been so fun. Like, you know, almost dying. Not fun, but. You can't make a judgment on somebody's quality of life just because you think it would be too hard. Where do you draw the line between this is awful and my life isn't worth living anymore. And to me, it's. I don't. I don't steal mine like that.
Still, while Emily clearly believes that her life is worth living and urges parents to embrace children with CF diagnosis to choose to love their children through the same kinds of struggles she's faced, she's optimistic about the ways in which these treatments. Might offer hope for these families.
Probably every family with CF would love to see a cure they could avoid so many of the complications that a lot of us or people. Have have gone. Through so I've. Never had a problem with the gene editing. Or, you know, trying to curse, yes.
Then again, the condition is complex. Emily notes that there are 10s of thousands of mutations that result in CF. Hers is one of the rarer ones, so the likelihood of researchers finding a solution for someone like Emily is small. Which brings up another question. If we are going to invest time and funds into these types of research, who is it that benefits and how do we decide where to? Focus. It's much simpler when we're thinking about how to use an intervention that can improve things for the individual. But of course, human beings don't live like that. We are social creatures. What affects one of us has an impact on all of us. And while Emily would be willing to try a genetic editing therapy on herself, she sees it as more of a tool than playing God. She's cautious about using it to manipulate our offspring.
What makes me really nervous is when we separate pro creation from men and women married and we move it into a lab and we say we're going to genetically engineer a child for this level of intelligence or this gender, you know, first of all, that makes me nervous because then I can truly are playing God. I get really nervous when we talk about creating defect free children and things like that. I think it's completely different if you're looking at a child. And so we're gonna go ahead and fix it. I don't see that as different than doing any other kind of prenatal surgery or anything like that because it's.
State.
It's just a tool. We're we're fixing something that's wrong with the body because as much as I might not want to deny, I mean my body's. Kind of messed up and I sell you the level.
Emily's getting at the distinction we hinted at in episode 1. The distinction between therapy and enhancement, or as Father Nikanor qualifies it. The difference between therapeutic enhancement and social enhancement.
The difference between therapy and enhancement is a weak one, because we already enhance and we have no problems with enhancement. There are millions of people around the world who take statins to lower their cholesterol. If you ask their cardiologist what levels they're lowering their cholesterol to, they're actually lowering their cholesterol levels. Beyond the norm for humans, so there are millions of enhanced people running around the world who are pharmacologically enhanced. Because their LDL levels are below the human norm and we have no problems with that. So enhancement in itself does not seem to be a problem. We're not talking about the difference between enhancement and therapy, it's between. Therapeutic enhancement and non therapeutic enhancement and the concern that I would have is that the non therapeutic enhancement which is primarily meant not to restore well-being but to enhance social opportunity that would be a problem. We have problems when athletes dope themselves and doping is enhancement and the reason why we have problems when athletes dope themselves or use drugs to enhance their ability is because human competition, a supre supposes. That. The competition is going to be had between individuals based on quote, their natural abilities, so an argument could be made against non therapeutic enhancement and that it will exacerbate social inequality. Already the poor stay poor, the rich get. Richer.
This vision of the widening gap between the rich and the poor being expanded to include not only economic gap but also a genetic gap. That's the vision that's presented in Gattaca as well. The exacerbation of existing social inequalities is a real concern and then of course, there's the question if this type of research, genetic research, is really even necessary. What I mean by that is, given the complexity of genetics and the unknowns, maybe. The better use of our resources to focus on improving treatments rather than on eliminating the disease. For people like Emily, there's better physical therapy. There have been new discoveries that limit the amount of enzymes they have to take. What if we focused on? Making life with these conditions more bearable, would that be a better use of our resources? Still a solution that could just fix the problem. At its source. No matter how far off a dream that is, it's exciting to think about.
What would eventually be the cure? The ability to take out the bad bit of seven and replace it with a bit that actually works. Because, you know, God gives us so many fantastic, you know, minds and abilities to do this sort of research. And, you know, I think it's really great. It would save so many lives. It would make so many families lives easier. I remember my CF nurses saying, you know, our goal is to close this clinic down. You know, we don't want to be here in 25 or 50 years. We want to be out of a job.
It's a really exciting possibility for people whose symptoms range from the inconvenient to the debilitating. But what about when a genetic condition doesn't just cause symptoms? What about people whose entire identity and way of relating with the world is colored by their condition? What about when eliminating a disease means eliminating an entire class of people? That's next time on brave new US.
Bewell. Well, and I will be well and be well will be well and I will be well and will be well.
For access to full interviews, recommended reading and a forum where I personally respond to your questions, visit our Patreon. As always, this episode was written and produced by me. Special thanks to Mackenzie Kim, Lauren Klingman, and Jessica Gerhardt for her original music. All will be well. You can find Jessica. On Spotify, God bless and thank you for listening.
We will be well, we will be, will. Well, well, well, well. Will be well and will be well. Well. Be well. Well, in love will be well, will be well. Only when we well and will be will be will be will be will be, will be well and will be will. Well, and I will be well, be well will be well and I will be well and I will be well, I will be well and I will be well and all will be well.