Over the course of this season, we’ve explored the science of changing our genetics, asking which characteristics we ought to change, and why. Who gets to decide? Left to our own devices, do we really understand what’s important about ourselves? If we use genetic editing to “improve” ourselves or our children, will it have the impact we think it will?
Guests appearing in the episode:
Shannon Evans
Shannon Evans is the author of Embracing Weakness: The Unlikely Secret to Changing the World, and writes the Everyday Ignatian column for Jesuits.org. Her passion is opening up deeper waters of contemplation so that our experience of the Divine grows further loving and curious rather than static and complacent. Shannon, her husband Eric, and their five children make their home in central Iowa. You can find Shannon at www.shannonkevans.com.
Fr. Nicanor Austriaco, O.P., is a Dominican priest and a professor at Providence College, RI. His areas of expertise are the biology of cancer, aging, and programmed cell death, health care ethics and bioethics in the Catholic tradition, and philosophical and theological implications of modern evolutionary theory.
Transcript
This is an unequal, technologically advanced society where humans are genetically bred, socially indoctrinated, and pharmaceutically anesthetized to passively uphold the prevailing social order, all at the cost of our freedom, full humanity, and perhaps also our souls. Sound familiar? It's off the book jacket of a science fiction novel from 1932. We are approaching 100 years since Aldous Huxley imagined this dystopia, and the similarities to the world we live in today. May Huxley sound more like a prophet than a science fiction writer. It's the novel I named the podcast after. It's important because as Father Nicanor mentioned in episode 1. The ways in which we decide to use are the tools at our disposal. Those are what determine the kind of society we live in now more than ever are individual choices shape the world. Everyone else lives in. When we use these emerging technologies, we aren't just deciding for ourselves anymore. If we ever were. I started out this season to explore at the ethics of genetic editing. Here we are. It's the final episode and I'm not even sure I've made-up my mind yet. Have you, on the one hand, we have had guests who are pretty optimistic. They see genetic editing as a tool with some really amazing medical implications. On the other, we've heard the perspective that tweaking our genes isn't like taking antibiotics or getting a robotic arm. But that changing our genes is something much more fundamental, a piece of who we are, and that God is the one who decides what pieces we're made of and how they'll fit together. And even though I'm not entirely sure, I've made-up my mind yet. The more interesting questions for me have been the unexpected ones, not ones about research or even allocation and justice, but what makes us want to drive out our imperfections in the 1st place. It's made me question why we even see. This ability is something bad and wonder whether it's not the broken pieces. We can see that need fix. So much of this season has led back to this theme of vulnerability, how the impetus behind everything from designer babies to eugenics has seemed to stem from this fundamental unwillingness to be who we are with other people. It makes me think of Adam and Eve in their nakedness and their shame and their desire to cover themselves up. Now that story seems less about sex and more of a symbolic way of saying that we've rejected ourselves and our place in God's plan. He made us to need each other. And we don't like that. We would rather expend our energy covering up the way God made us hiding our weaknesses than to risk bearing ourselves to one another. We are terrified to be ourselves, to let our guard down because we spend so much time trying to cover up our weaknesses. We've grown intolerant of the weaknesses we recognize in other people. What if the impulse to create designer babies to try to erase disabilities from the human genome? What if this is all just an extension of the ways we already reject ourselves? If we could learn to look in the mirror, to turn inwards and embrace what we find there, whatever we find there. If that were the way we met the world, would we even see the need for something like genetic editing? I'm Samantha Stephenson and this is 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, well, it's inherently good or 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. That puts an insane amount of pressure on people to earn or deserve their place.
We are dealing with not simply shaping a life, but actually shaping the.
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 with Brave new US. I wanted to have a conversation with someone who's thought more about this idea of vulnerability than I have. I reached out to Shannon Evans, author of one of my favorite books, embracing weakness, the unlikely secret to changing the world. Shannon is a rare soul whose warmth and kindness matches the beauty and depth of her writing.
There was definitely a conversation about. Is anybody going to buy a book called embracing Weakness? Does anybody really want to? Do that because it is. It's something that we're really not accustomed to, and I think that in our. Western Society, I mean specifically the US is what I can personally speak to is. It's so built. Around kind of a mirage of of power and. Competency like even more than power, you just need to look like you have it all together. You need to look like you're in control of your world, looking successful, being the best, or at least being passable. But nobody wants to be seen struggling. Nobody wants to be seen as vulnerable, and I think it just. Creates a really. A really toxic society and that our mental health is just in crisis because we are. We're kind of constantly living in this tension between who we actually are on the inside and who we feel like we are supposed to be presenting to the world, which is never, never fully in alignment with what's going on inside of us. It's difficult. It's really hard. I have so much compassion for us because, like, we just set ourselves up for so much, so much in our angst and so much sadness. And I think it can be really hard to. Pave the way out of that. I think you have to do it really intentionally, really mindfully.
So how do we do that? Well, as we've discovered, one of the gifts of the kinds of communities, like the disabled, whose weaknesses are more apparent to us, who are naturally more vulnerable, they invite us to become that ourselves.
That's so rare in our society to really have people who we are safe kind of coming out of our shell with, like our shell of protection, you know, and and and sort of letting. Letting that vulnerability find a safe place to land or, or letting that honesty find a safe place to land. And for me in my life, it's that's really happened in communities of the marginalized and people maybe with mental health issues, homelessness, things like that and that's. And if it's a different experience than the conversation surrounding disabilities and those kinds of things. That I think ultimately. Is a matter of how how few spaces we have that invite that kind of vulnerability, that kind of honesty. And so when we're when we're around people who are free from that kind of self consciousness. It invites us to to that same freedom, and that's so rare that it really transform. Thanks.
Shannon's advice comes from experience. She lived as a missionary in Indonesia, and it was only years later that she began to reflect on the emptiness. But one sidedness of that experience, and ultimately that was the impetus behind her book. Her desire to share the message that if we want to reach for wholeness, we have to offer our full selves. In relationship with each other. The top down arms length approach that is so common to the so-called Messiah complex will never work.
Coming in and thinking that I have what you need. I know enough, even though I don't know really much about your experience at all. Like I know what's going to make your life better. I know what's going to make your relationship with God. Fulfilling. I can come alleviate your poverty and the heart behind those things are not always bad, but it can be really dangerous when it's not coming from a place of humility and oneness. I think was that was the thing that I learned. Perhaps most of all was that. I had no intention of having reciprocal relationships, and ultimately because I thought that I was coming to help them, and so ultimately that led to me becoming depressed and and as I kind of journeyed through those emotions and tried to figure out why I wasn't, I was. So depressed when I was living this life that I. Thought was going to fulfill. Me. Kind of realizing that none of my relationships with the people that I was intending to serve were were mutual. It was all about. What I could give them, and they knew that they they felt that for me. And so they would have walls up and I never got to know them the way that they deserve to be. Known. And that experience really translated a few years later when we were a part of a community of mostly people who were homeless at the time. And I kind of the way that that community was set up, it was a Catholic worker, the ethos of it was mutuality and relationship, and everybody has something to contribute, whether that's cooking for everybody or cleaning up or serving the group in some other way. And it was radically different. Than any sort of service or ministry that I had seen modeled before that and not really began to kind of. Change the wiring in my brain for how I understood quote UN quote ministry or just what relationships in general should be.
So how do we make this shift? It's not as complex as you might think. In fact, starts with the person right next to you.
I think everything kind of begins in the home, right, whether that's whether you are a parent with children or whether you are living intentionally with several roommates or whatever, like your your life circumstances, whatever home means to you. I think we just began by practicing openness and vulnerability and and training ourselves to stop trying to solve people's problems for them, trying to stop, even giving advice like little things like that, and just starting, starting to listen, starting to learn. To empathize, rather than trying to solve, I think little ways like that kind of plants the seed that then translates to those bigger waves of. Maybe volunteer work or service or ministry or things like that that we could sort of compartmentalize. But I do think for people who are who are already involved in those kinds of things, I think there is room to to then start poking holes in it and start asking questions like if it is a traditional soup kitchen. Model are the people who are there volunteering, actually sitting down and eating with the people who are coming for the meal? Because if not, that's. That's a pretty non reciprocal relationship. And although like the heart is certainly good behind it, I think the highest good in that circumstance would be. To have little seed communion together, to to eat together, to break bread together. Because then everybody has a seat at the table. It kind of levels the playing field. So I think that there are kind of theoretical things that we can do to start. With maybe our closest relationships, but then I think that they're also really, really good, valid, practical ways that we can maybe change perspective a little bit on the things that we're already doing in a broader scope.
In light of all this, it makes sense that Shannon sees something fundamentally important in all the ways in which we are different from one another. And the diversity that might be lost if we were to take on the task of choosing our own characteristics or those of our children.
Quirks and flaws and imperfections, and whether that's diagnosable disability or if it's just something kind of quirky about a person and that that's what makes us human, that's what gives our our tapestry of humanity all of the richness and and the color. And it would just be, I think it would be a really. Sad state. I mean specifically from that that viewpoint of embracing weakness, like trying to wrap my brain around what if society would look like if we were strategically and intentionally making medical decisions and scientific decisions that weeded out imperfections or weakness or kind of let the. Let the cream of the crop be the only thing that remains. That that puts an insane amount of pressure on people to be perfect and to be impressive and to earn or deserve their place in the world. And I.
I.
Think, especially as Christians, is like more than anything what we should be communicating to the world, right is that you don't have to earn anything that the love of God is extravagant and it's free and and grace is as well. And there's always room for, for anyone. And so yeah, it just it. There's a part of me that just, like, physically aches to think of a society, to think of my children, maybe, or having their children in a society where there is that much pressure on, on deserving to exist.
Deserving to exist? That's not the kind of society we want, but in many ways that is where we are headed. The kinds of decisions that lead us there spring out of who we are and the ways we are already living. In so many ways, we demand perfection of ourselves and of one another. The pressure is everywhere.
So.
How do we change the tide? How do we create a world that is more hospitable for everyone? Absolutely. The big decisions matter. The political fights on behalf of the dignity of every human being, the unborn, the immigrant, the prisoner on death row, they matter. They are worth fighting for. But if we want to shape a more hospitable world, it starts with us. We start by becoming more hospitable people. We have to pray along with Saint Francis. Let it begin with me. So where do we look for the model of how to live in vulnerability wholeheartedly? As Bernie Brown says. At the risk of sounding completely obvious, our example is in Jesus.
I love that in in the gospels we see Jesus as humanity, like we don't see this robot spirit Angel guy come down and everything's perfect and easy. We see him struggle in relationships. We see him experiencing really normal human emotions. We see him physically. Weekend and when he's bouncing or we see him tired and need to nap, we need to get away from the crowd because he's like I'm done being an extrovert for today, all of these very human things that we can identify with and I just think I think that there's a lot of our spirituality that that miss that I think we think so much. That Jesus is divinity and we don't spend as much time thinking about his humanity. And I wonder if he did. Like as a as a communal body of Christ. If we did really explore that the way that it deserves to be explored, how it would affect the way that we engage fellow human beings and the way that we are able to be honest with ourselves and be able to accept our own humanity. OK. I think the more that we see the dignity given to the human experience by Jesus and the more we're able to have that self compassion and have that acknowledgement that experiencing emotions is not the same thing as sinning, and you know, like all of these things that I think in theory we know. But a lot of times it hasn't taken root because we we spend such a significant chunk of time talking and thinking about and relating to Jesus of God rather than rather than giving time to that community. So I think when we look at these decisions. It would only help. As we make these hard decisions to. Kind of reevaluate. Our spirituality and to ask how much of how much of the life of Jesus, the the embodiment of Jesus, is informing our spiritualities because I think we might be surprised by how much that correlates to the values that we have with our fellow human beings and the way that we make these kinds of decisions. Not something that is emphasized enough, honestly.
When I taught high school theology, one of my favorite stories we read every year was the parable of the Fish Bowl. It's not one of Jesus's parables. It's not in the Bible. It's about a little boy named Juan who finds a dirty glass bowl in the trash. He takes it home and shines it up and decorates it. He creates a home for a fish, a pathway for the fish to swim along with things he finds outside around the house. One day, finally, it's ready. He fills it with water and runs down the street to the pet store. He hands over a jar filled with coins in exchange for a goldfish. But when he gets the fish home, it doesn't seem to notice the way Juan arranged everything in the Fish Bowl. He just swims because he's a fish. He can't appreciate all the effort Juan went to to design this world. Juan tries to talk to him, explain how to use the bowl properly. He even yells. He gets louder and louder. Which of course doesn't work because Juan is a boy and the fish is a fish. The parable ends with this line, so one spent a lot of time wishing he could become a fish. In the incarnation, God bows down low. Jesus enters our world and shows us how to be vulnerable and that to be human is to be vulnerable. So this chase of perfection we're all doing, it's the wrong race. The more we seek to bulletproof ourselves, the more we isolate and close off the further we will be from being who we were made to be. More vulnerability does mean more pain, but it also means more relationship. It means more connection. It means. More love.
Vulnerability is. An imperfection is actually what unifies people. I think that perfection is something or or success or power or competency or any of those. Those kind of words. I think that those. Impress us. They get our respect, they get our admiration, but they can't connect our hearts in a deep and meaningful way. There's nothing wrong with succeeding, but that's not going to be the point where you establish meaningful relationships in the life. That is its own thing, but that's not how you form these connections with other human beings like we are wired to connect through through our. Through our imperfections, through our shared struggles, through our, I mean just think about the times that in your life that you felt, you felt that spark of connection in a conversation with somebody, that deep feeling of belonging. It's not ever like because you both agree to the same. Like the without cable ideals or or. It's not because you've both won some award at your company. It's because you. You both struggled in your marriage or you both have a special needs kid or you both. You know these things, these human experiences that make us a little rough around the edges. That's exactly what bonds us together. And so I think that we can never have a healthy functioning society without that element. And I mean. Even now, it's not like our our society is functioning that great and healthy, but I think the only way to make it better is actually to make more state. For peoples imperfections to make more space, for that to be something that can be brought to the table and and discuss and and to share experiences in that way and let that birth a sense of empathy in our society that frankly right. Now is missing.
Embracing our vulnerability and the vulnerability of others is the best path we have to battle our own perfectionism, and this impulse to create perfect people. We want perfection because we long for what's greater. We long for heaven. But we've gotten it backwards. Heaven is not in perfecting ourselves. Theologically speaking, heaven is the fullness of the presence of God. The way we experience some fraction of that here on Earth is love. And if God is love, God is the fullness of being the epitome of what is real, then the more we love, the more we participate in God, the more real our lives become. Maybe this is what Saint Teresa of Calcutta was talking about when she described the paradox of love. If I love until it hurts, then there is no hurt, but only more love. When we run from suffering, when we pursue lives of ease and leisure, what we are actually escaping is life itself, and with it, the love that brightens reality. We escape into deafness, into non being and. Maybe that is a little philosophical, but this is the last episode.
What is the point of? Our existence is. That. Accomplishment. Or is it relationship you know? And I hope that everybody would say relationship. Because life becomes meaningless without it, and and you can't really have relationship with somebody who is perfect, like, that's annoying. Nobody wants that friend. You know. You want people that you can connect with in your community. And I think we lose sight of that a lot of times when we, when we we start kind of getting tempted. By by this this idea taking away all suffering or taking away all hardship and. Forget that the ramifications of that are that it affects our potential for genuine relationship, that interdependence of being created. You need each other, and that's a beautiful thing.
At the close of our conversation, I am all in. I want to embrace diversity and celebrate the abilities each of us does have without feeling the need to qualify anyone is lacking. Just because we have different capabilities. But then I think. That's a little bit too easy. It's one thing to revel in love triumphing over darkness. It's another to pretend that the darkness isn't there. Yes, a candle shines brightly in the darkness. But think of all that we'd be missing if we had the chance to turn the light on, and we just didn't take it. As with anything to do with the human condition, the truth is hardly ever black and white. We need nuance.
What we're saying here is that the trisomy Down syndrome child is experiencing a lack that challenges him or her from from living out the fullness of human fulfillment. If we had a medical intervention that allowed us to provide that human being with the to correct the genetic defect in such a way that he would be able to live a full life, I would, I would say. Fine.
Remember Father Nikanor from episodes one and two? Here's what he had to say about how we might be able to go about healing without insisting that people themselves need fixing. After all, if Jesus was anything, he was a healer.
People have have argued that deaf people have an identity because they're deaf, and I think that's absolutely true. But I don't think that that argument, if we discovered a way to allow deaf people to hear, I really don't think that that argument can be used with great efficiency. If what we have is a way to allow that. That person to hear Beethoven for the first time to hear the the the voice of their mother for the first time. God doesn't make mistakes, but nature does. God allows such mistakes to occur because and there is a deep metaphysical argument here about how material world is is prone to error none and and that God has chosen in his wisdom to create a material world. And he allows that material. World to exist in spite of its if it, in spite of the the physical evils that give rise to it, it's the same thing, right? So God does not make mistakes in the in a patient who has a genetic mutation in the same way God doesn't make a mistake with a cancer patient who has a genetic mutation. Remember. Cancer is a genetic disease. It's just that it's a genetic disease that happens after birth. So if we have no problems thinking about cancer patients and saying God doesn't cause them cancer, God didn't give them cancer, then we can also say the same thing. God does not give a Down syndrome patio. And trisomy 21. However, you know there is a reason why we call them disabled. They are disabled. They lack the perfections of human nature that God intended to give all of us from the beginning, which is why there is. We have to value them, respect them and they are great gifts to us at this time, but the disabled person is not unlike the sick. Person the sick person also encourages us to encounter God's mercy and grace and and challenges us to learn that we are dependent upon each other. But this would not mean that we are not supposed to cure sick people. Right. If we are able to find ways to heal disabled person. Then we should heal them in the same way that I am fighting to heal cancer patients. And I would hope everyone agrees that even though they are often mirrors of our fragility, they they may help us to see ourselves, to see our creature Lyness. To see our brokenness, we still would hope, because they are suffering, to give them what they need to heal and disable people, no matter how well adjusted they are. Are deeply aware that they lack something that their brothers and sisters have, and so if God gives us the opportunity and the capacity to return to them, what should have been, I think you can see that that there should be no moral problem with that. Right, because we are helping them to be fuller than they are now. They are full, of course. But if we can, it's just like a cancer patient can be full. But that doesn't mean we're not going to give them the chemo. This does not mean we're going to do the surgery. And if we are able to do genetic engineering, genetic surgery, that will allow a downs trying something baby to live a a life without the challenges, without the struggles of downs. I would be very I would be the first one. There to say. Let's do it. Let's help this brother of ours to. Live a fuller life than it was possible at birth. Because of this genetic disability.
So as much as I want to protect people with disabilities, this also makes sense to me. If we can heal, we should heal, right? Except. What about all of the ways that our vulnerabilities bring us together? It makes me relieved that, for now, those decisions are not mine. At the same time, at the rate things are going, that won't be the case forever. We will need to weigh in. What will we say? At least for my part in all of this, I would prefer to be standing with whoever needs the most protection and to avoid doing anything that makes the world less welcoming for people like them. If it is less welcoming for any of us, it is less welcoming for all of us. But what about this idea of healing? Making the death here? That's pretty clear. Jesus himself did that well, what about those disorders that color the whole identity of the person? I keep thinking back to this class I had as an undergraduate. We were reading Augustine and talking about resurrected bodies and how in heaven all will be made new. And I wonder for people whose capacity is so limited here on Earth. What will it be like for them?
Christ makes everything new. When we see each other in heaven, we will be whole. Now it's interesting though, that the Savior's body, his resurrected body, will be wounded for all eternity. And it would be wounded for all eternity because the wounds were the means by which he he fulfilled his vocation to be savior. They are, as an everlasting sign of his love. So there are there are fathers, Saints who have suggested that our bodies in glory, and they will be glorified bodies, and they will therefore not have any of the deficits that we experience as deficit. Here in this life may still be wounded. And that they're it. They will carry the marks by which we became Saints. So someone who had a tumor, but it was that tumor that made her a St. may carry the tumor now, not as a sign of illness, not as a sign of suffering, but as a sign of victory. And if you could imagine a downed child, a downs child in glory will not have the cognitive deficits that that she is experiencing in this life. But you could imagine that God in his glory could allow her to maintain the facial features. Of a downs person in order to reveal to all of the elect. How her cross was the means by which she cooperated with great grace in order to allow Christ to save her. So you see what will happen is we will not be wounded and that we will carry wound.
And.
That hold us back that prevent us from becoming who we are, but we may carry the remnants of those wounds now transformed, now resurrected, now glorified.
So. What do you think? Are you in?
Oh.
Here's where I show you my cards. If I haven't already. The thing I love about bioethics isn't really about the bioethics at all. I'm less interested in the actual nitty gritty of how exactly it's permissible to do the X or Y thing, though I think that it is important. Don't get me wrong. And more interested in the kinds of things that lie beneath these questions. See, you can't really unearth the truth about how to treat human beings or what human beings should do unless you unpack something more fundamental. And that is what human beings are. What are we made to be? And that that is the discussion we need to be having because somewhere along the way we forgotten that in a society that wants to strip religious influence out of every cultural and political sphere, we need to speak up. And I don't mean we need to be shouting louder. I mean, we need to make space for the kinds of conversation that bring everyone's wisdom to the table, especially religious voices. Because as it turns out, these traditions have been talking about these kinds of questions or thousands of years. What we need isn't to silence those voices or get rid of their influence, as though there's some kind of freedom of thought in plugging one's fingers in one's ears and saying I'm not listening. No, we need to invite to listen, to consider. And that's what excites me about bioethics. It's a chance to use new problems to explore age-old questions. Thanks for sticking with me. There is so much more to come. If you've enjoyed season 1 of brave new US. Visit the show notes for the link to sign up for our newsletter. You'll get updates about upcoming seasons and related publications. Things you can do to ensure future seasons share this episode. Help get the word out about the podcast. Leave us a review on Apple Podcasts and consider supporting the podcast through our Patreon page. The link to see all of the great benefits like extra content and the ability to vote on topics for future seasons that's in our show. As is the link to check out more of Jessica Gerhardt's amazing music, she's a genius behind the song you hear playing right now at the end of every episode. This season would not have been possible without our fantastic guests. Please be sure to check out the show notes once again for links to all of their books. Social media let them know how much you've enjoyed their work. Special thanks to Lauren Klingman and Mackenzie Kim. Until next time, I'm Samantha Stevenson and this is brave new US.