Gene editing technology like CRISPR may have potential to treat diseases, but does editing future generations go too far? In this August 9 event, we heard renowned bioethicist Françoise Baylis, reproductive justice activist Nourbese Flint, and disability rights scholar and activist Karen Nakamura discuss the serious societal and ethical implications of human gene editing in the context of assisted reproductive technology. This discussion was moderated by Osagie Obasogie, professor of law and bioethics at UC Berkeley.
Transcript
Osagie Obasogie:
Good morning. Thank you for joining us for this exciting conversation. My name is Osagie Obasogie, and I'm a professor of law and professor of bioethics at the university of California, Berkeley. And I also lead the health disparities cluster at the Othering and Belonging Institute. The science and ethics of human reproduction are at a critical moment. For example, the issue of assisted reproduction continues to evolve in a manner that can give more people access to a suite of procedures that can help them have children and become parents.
These technologies continue to have their own ethical challenges, such as when is it appropriate to screen embryos? And when is it appropriate to make decisions about which embryos to implant based upon information obtained from these screening technologies? At the same time, new technologies such as gene editing have been used in the context of agriculture and plant sciences to insert and delete sections of DNA to manipulate the traits that organisms exhibit. Yet, as these technologies mature, the ability to use gene editing on humans becomes more of a reality. Jennifer Doudna, a Berkeley professor who won a Nobel prize for developing CRISPR technologies recently said that she expects to see gene edited babies within 25 years.
Thus far, much of the public conversation about assisted reproduction and gene editing have run parallel to one another, but there are serious and important questions that emerge once we start thinking about gene editing, not only as a singular tool to manipulate DNA, but also as an assisted reproductive technology in and of itself.
During today's panel, we will further explore the ethical and societal issues that emerge at the intersection of gene editing and assisted reproduction. Leading this conversation is Meghna Mukherjee and Nairi Shirinian, who authored the report Engineering For Perfection. Meghna is a PhD candidate in sociology at Berkeley, and Nairi is a lawyer in Southern California. Joining us as discussants are Francoise Baylis, who is a distinguished research professor at Dalhousie university, Nourbese Flint, who is a reproductive justice advocate, and Karen Nakamura, who is a professor of anthropology at UC Berkeley and also chairs the disability studies cluster at the Othering and Belonging Institute.Meghna Mukherjee:
Good morning, everyone, and thank you so much for joining us at this important discussion. As Osagie mentioned, my name is Meghna, and I'll be starting us off with an overview of the research report, Engineering For Perfection, that grounds our conversation today.
So first, a brief introduction. As I mentioned, I'm Meghna. I'm a PhD candidate in the department of sociology at UC Berkeley, studying the social impacts of fertility and genetic technologies. My co-author, Nairi, is a practicing attorney and is especially interested in questions around critical disability.
To start, we wanted to share a little bit about why we wrote this report. We were taking a bioethics class together when the world learned that Dr. He Jiankui unethically edited human embryos that led to the birth of three children. This event sparked so much controversy and public discussion about human genome editing. But what we were most troubled by was that much of the discussion we were seeing wasn't very critical of using CRISPR as a reproductive technology, so we wanted to address that. We wanted to bring assisted reproduction and disabilities into a critical conversation about gene editing.
So how does CRISPR work to edit genes? I'm going to provide a very summarized version of this without going into much of the technicalities. CRISPR is short for clustered regularly spaced short palindromic repeats. It is a genome editing technology that can be programmed to recognize and cut snippets of DNA. CRISPR is often described as a search and release tool, where specific genetic sequences can be targeted, cut out and replaced by other DNA to create desired genetic outcomes.
When it's used on germ cells like eggs, sperm, or embryos, also described as germline editing, the edits made will be copied into every cell of the developing body of the future individual, and they will also be heritable for their future generations. While CRISPR can be used effectively on other types of cells, not germ cells, this report will focus on its implementation for heritable germline editing. I'll discuss some of the critical safety, ethical and social concerns today, which we also dive into in much more detail in the report.
So with that, I'm going to move on to the research report. And for those who haven't had a chance to read the report yet, I'll highlight a few main points before turning it over to our wonderful speakers for today. We start off this report by examining existing assisted reproductive technologies. We focus on three in particular, genetic carrier screening, pre-implantation testing of embryos, and gamete selection, which is often referred to as egg or sperm donation.
We show that these technologies enable many of the aspects of fertility and child bearing. They allow parents to have children, sometimes genetically related children, and allow selection against certain genetic conditions without having to alter human DNA. For example, pre-implantation genetic testing allows parents to screen their embryos for various conditions and choose one that best fits their reproductive health needs. We argue that these existing technologies make CRISPR unnecessary. They accomplish the reproductive objective that CRISPR would provide in terms of having healthier children, in a less harmful and less risky way.
So although these existing technologies can be helpful, access to them is already unequal in terms of race and class. For example, we know that even though women of color experience higher reported rates of infertility, they are far less likely to access these fertility technologies compared to white women. Much of this also has to do with income inequality, as these procedures are expensive and not always covered by insurance. These reproductive technologies also normalize the idea that people should strive for particular types of families. We can see this in the way that people select their eggs and sperm donors in the United States. They emphasize values that are gendered, racialized and classed, and that also discriminate against disabilities. Increasingly, we see systemic pressures to routinely use assisted reproductive technologies, especially genetic testing, to prevent the births of disabled children.
So situating CRISPR in the context of assisted reproductive technologies and the existing inequalities that they're embedded in, we show how gene editing would only make these issues worse. I'll highlight a few of these points here, but the report also contains a much more robust discussion. One of the main issues gene editing would bring is its high cost, which would make the class inequality, in terms of access to reproductive technologies, far worse. We could imagine lower income people of color being excluded from these technologies, while those of higher income edit their embryos for more genetic privilege.
Secondly, editing human embryos is still unsafe and has many unknown risks. Scientists point to unintended consequences, like off target effects or unknown changes and immune responses as examples. These changes would also be passed down to future generations, potentially causing much broader social impacts. Moreover, to date, we still don't have any information about what the long term negative health outcomes the three children that Dr. He Jiankui edited might face. So even though existing reproductive technologies are risky, these risks are well known in contrast to CRISPR, that brings with it far greater concerns, many of which remain unknown.
Finally, gene editing would allow people to enhance their embryos, creating a sense of genetic privilege amongst future generations. You can imagine people eventually enhancing their embryos for intelligence, physical strength, height, or personality and behavioral traits like memory or impulse control. Not only would that position those who are unedited as genetically disadvantaged, but it would also create immense pressure for those who are edited to live up to some sort of potential or ideal.
To end, we suggest a few ways to respond to the concerns of genetically editing embryos as a global community. And again, I'll cover a few of the main points here, but we do delve into far more detail in the report. Our brief ends with a call for a global ban on genetically editing human embryos, along with several other specific regulatory suggestions.
We hope that you'll read this report, if you haven't already, to see how CRISPR needs to be understood in assisted reproductive technology. Too often conversations about gene editing and assisted reproduction happen in separate spaces and fail to examine what lies at their nexus. Looking at how these topics intersect, we show that gene editing for reproduction will exist within the same market pressures and the same unequal social systems as existing reproductive technologies. The difference is that gene editing would bring far greater harms. And with that, I'll now turn it over to our wonderful speakers for today's event. Thank you again for being here. We hope you'll enjoy the discussion.Osagie Obasogie:
Thank you, Meghna. Our first discussion today is Francoise Baylis.Françoise Baylis:
My talk today is entitled The Lady Vanishes: Redux, and that title is borrowed from Donna Dickenson, who did work in the early 2000s in the area of stem cell research and the impact of some of the new technologies in terms of failing to see the women, hence the title, The Lady Vanishes, and I want to take that up again today. So let me just share with you the main points that Donna makes in this 2006 paper, which really emphasizes the invisibility of women.
She makes the following points. Eggs are crucial to stem cell research. Eggs come from women, and women have legitimate interests in their eggs and also in their reproductive labor. And the conclusion she draws from this, is that it's really important that we not see women and their eggs as merely containers, and that women's reproductive labor has to be seen for what it is, which is critically important. Now, what I want to suggest is that these same points that she made nearly 20 years ago about stem cell research apply very much today to human genome editing.
So you've already heard about the first gene edited humans. This was in 2018. This is the Chinese scientist, He Jiankui, who announced to the world, in November of 2018, that he had created two children from this technology. We have since learned that there was a third child as well. At the time, the response was immediate and largely one of condemnation. But I think you can see this in three brush strokes. The first is skepticism. How did you do it? Or did you even really do this? Because in fact there was no peer reviewed published paper. What we had were news articles, video reports, a conference presentation. And so there's initially some skepticism about what had actually been done.
And then there was a sort of incredulity, and that's really in the context of how could you do this? And this was both directed at the individual by the scientific community, getting angry with him, saying you're going to mess it up for all of us, by going ahead and doing something that we think is irresponsible, but it was also addressed to the scientific community as a whole by civil society and suggesting you're actually not capable of governing yourself, and here is a prime example. And then there was also something that I think stretches a little beyond that into this area of condemnation, how dare you do this? And I think for me, that's one of the themes that's really important, largely because I have argued for some time now that the issues at stake here are far too important to leave to an individual scientist or even to the scientific community.
Now, the thing I want you to take away from this is you have outrage expressed at this time at the meeting that was held in Hong Kong, where he presented his data. And yet at the end of this meeting, the organizing committee issues a statement saying that germline genome editing could become acceptable in the future. And in anticipation of that, they issue a statement that says it's time to define a rigorous, responsible translational pathway towards clinical trials. So basically what's being said here is, we don't agree with what this individual scientist has done. And very quickly he's described as a rogue scientist, and it's said that he's one bad apple. And what we need to do, says the organizing committee, is put in place structures, such that we can in fact go forward.
I want you to understand then what are these supposed structures? What are these elements of a rigorous responsible pathway forward? These are the five broad brush strokes. And I think if you have a chance to read the report, you'll see that many of those issues are actually called into question, starting with the comment about the absence of reasonable alternatives. Because as you've heard in the prior presentation, there are alternatives. There's also some very interesting discussions to be had about this notion of a compelling medical need. But the thing that I want you to appreciate is the assumption seems to be, we're going to get there, we just need to find a responsible way to do that. And this brings us back to stem cell research.
So I told you that Donna Dickenson wrote this very important paper in the early 2000s, The Lady Vanishes, which was specifically about stem cell research, and the failure with that science to pay attention to where the tissue, the material comes from, and who is actually involved, I.E. the women.
And what's important is that in 2021, the international stem cell society for stem cell research does something that's very interesting, I'll say, which is that it identifies three categories of activity, where previously there had been two. So prior to 2021, if you were to look at the previous guidelines, research was either permitted or prohibited. Two categories. But in 2021, they introduced a third category, such that we now have research that is permitted, research that's not permitted, and research that's prohibited.
Now, you might wonder, what's this not permitted? If it's not permitted, doesn't that mean it's prohibited? Not according to the ISSCR. And what's really important is for you to pay attention to the words that are highlighted, and then for you to know that in adding this third category, they move heritable human genome editing out of the prohibited category, into the not permitted category. It's not permitted, but it's also not prohibited.
And so I think it's really important then to appreciate which communities are contributing to and moving the debate along. This, arguably, is part of moving towards a translational pathway, but this is something done by a group of professional scientists, not consulting with the broader community. One of the things then that I want to just put up for you is to say that civil society has been trying to engage with this issue, has been trying to say that in fact there are some significant ethical issues. Meanwhile, they're suggesting that it's only the unresolved ethical issues that appear in this category of prohibited, and that somehow they're all resolvable if they're in the category of not permitted.
But I won't take you through these now, but it is just to say some of what you've already heard, which is that heritable human genome editing is about changing the next generation. It's about creating an individual with specific traits. It's not about treating or curing or preventing, and as such, it's not a therapeutic intervention, it's a reproductive intervention.
I'm going to end with just a few slides on ethical challenges. I'm going to describe in detail two of them, and then I'll just quickly move through the rest so that we can have time for conversation. The ethical challenges, one of the things that I think is really important to appreciate here are many things that can go under the banner of opportunity costs. And the main point that I want to make here, and that I describe in detail in my book Altered Inheritance, is that there is only so much time, talent and treasure, which is a reference to money, and we need to use these resources widely. If people are working on problems that aren't important in the grand scheme of things for the vast majority of us, what's being left undone?
And so one of the things that I think is really important is for us to step back and say, what's the real problem you think you're addressing with this technology? And is it the most important problem, or could your talents be better used helping to solve other kinds of issues that affect a much broader swath of society, such as things to do with food security, environmental degradation, climate change, et cetera.
The other thing which you'll not be surprised to hear me say is that I'm deeply concerned about the harms to women, and that's because they're largely ignored. Human eggs that are needed for this research are not just found on shelves in labs. They come out of women's bodies, and in order to get them out of women's bodies, you actually have to have them engage in a number of technical scientific activities. The two of which I'll focus on are ovarian hyper stimulation, which is to make the woman produce more eggs than would normally be produced in a single cycle, and then to actually go in and retrieve those eggs. And we already know, it's well documented that there are significant harms associated with both of those activities.
Another thing that becomes really important to think about this, which is that, do you pay for these body parts? In some cases, healthy volunteers are given money in order to go through those procedures and to provide eggs. What's a fair wage? Should they be paid? Should this be a gift? What happens when it's women who are undergoing IVF, where in some places they might be offered a discount on their IVF treatment in order to provide eggs for research? Or what if those women are just expected to be altruistic, because after all, they're already undergoing IVF and assuming the harms of ovarian stimulation, egg retrieval, so they shouldn't get paid at all, but others who might be university students, who would come forward as healthy volunteers, we'll pay them.
So there's a whole lot of issues there about what would be just or fair, but overarching is the issue of global commodification of body parts. Do we really want to turn the human body into something that you just have to put in the marketplace, or that you choose to put in the marketplace because you don't have any other resources? And I just want to say, it's not just about the harms of accessing these tissues for the research, there's also the harms of pregnancy, miscarriage, abortion, and delivery, all of which would be happening in a research context.
I want to go back to the point I made before, heritable human genome editing is not a therapy. It's a reproductive activity, and people would be being asked to participate in a clinical trial. And so a woman would be asked to accept to carry a child that's been genetically modified, and we don't know what those consequences might be. If the scientists were to notify the woman that there was a problem, would she be expected to have a termination of pregnancy? What would be the legal consequences for her if that were the case? Or what if she delivers and has a child that now is identified with serious challenges? Those are the two main harms that I wanted to highlight for you, that we can come back to in the conversation, and I'm now just going to very briefly emphasize the category for you to think about.
In addition to harms to children, there are potential harms to the prospective parents. In addition to that, there are the harms to future children, especially those who might be born with unintended, unwanted or harmful consequences. And it might not just be themselves, but their children and their children's children and so on. And then there's also harms to society. I think that's one of the things that we really ought to pay a lot of attention to. And again, you've already heard some of that in the introductory remarks, and we should be deeply concerned about increased discrimination, stigmatization, marginalization. And last of all, a more scientific concern, there could be harms to the gene pool, and that could be in either direction, either in terms of increasing diversity or decreasing diversity. Thank you for your attention.Osagie Obasogie:
Thank you. And our next speaker will be Nourbese Flint.Nourbese Flint:
Yay. Thank you. So I am just going to emphasize a little bit of what has already been said, but wanting to bring it into the reproductive justice framework. So first, I would want to start with about me, who I am and why am I talking about this or speaking at this space. I am a big science lover, but even more a science fiction lover, and my worldview is carried by the ideas of the star Trek Federation, which centers my worldview combined with a healthy dose of Octavia Butler weaved into those stories. And that also brings me to the reproductive justice movement and my worldview around it. The intersections of reproductive justice and genetics is a world that combines worldviews with love of profession and reproductive ecosystem in ways that both excites me and scares me.
So when thinking about this brief and where to start this conversation, I wanted ground folks in a quick working definition of reproductive justice for today. Reproductive justice is a framework born in the '90s, from black women, and has a deep understanding and deep theology around intersectionality using a human rights framework. I can spend the whole time with you speaking about the history, definitions, and evolutions and work of reproductive justice today, and there are a lot of brilliant people who could talk about it better than me, but for our conversation, I'm going to focus on the four pillars RJ has to do with.
One, the right to have children, the right not to have children, the right to parent your child in sustainable communities with dignity, and the right to sexual pleasure. And then for this conversation, I want to focus on two of those pillars, the right to have a child and the right to parent. To add to the conversation that has already been talked about, I wanted to start with the right to have a child. And I think it's important, and super important into the reproductive justice space, and super important into this conversation, because I cannot emphasize enough how important this pillar is, particularly with the long history in this country and the practice of eugenics, and who we desire as a people, and who are encouraged to have children.
For decades, black folks have lived in a world that we are constantly told that our lives do not matter, and furthermore have been the victims of people failing us in that conclusion and robbing us of our ability to reproduce. Examples of that would be the egregious amount of women of color who have gotten hysterectomies without consent or sometimes the knowledge of the procedure. And that is not something that is super deep in our history, that is something that was happening in California prisons up to 2011. But with that being said, we also know that BIPOC folks live, are more likely to be impacted by issues around fertility like fibroids and what was talked about earlier, and that BIPOC folks are less likely to seek assisted reproductive technologies, that was also mentioned in the brief, and less successful when they do use these technologies.
So people of color are more likely to be impacted by a lot of the environmental factors that cause infertility, such as being exposed to toxic chemicals, stress, inequality, the criminal justice system, that removes potential mates from our community, as well as limits the amount of people who could care for in our community. People of color are more likely to make less money than their white counterparts, which also was emphasized, and literally state sanctioned violence that ends up with the death of childbearing individuals are some of the reasons why assisted reproductive technologies are needed and should be an important part of the conversation.
And although there are many complicated factors around ARTs, including gametes and surrogacy and lack of addressing social ills that contribute to why people may need ARTs, the right to have a child is a deeply important issue encored in many folks of color, that have been robbed of the ability to start and make new families. But to talk about today, I just wanted to give that emphasis on the reasons why, but I do want to go into this space of the right to create family and the right to parent. And genome editing takes things a step further, that is simply more than creating family, and creates some complicated issues around if though we should and could do some of the technology that is and look like we're going to our future.
So as we discuss the need of genome editing, we'll add a couple of pieces of food for thought, as we think about the ability to raise families. So I know this is going to hit a lot of scientists in the heart, but science is not objective. We choose what we choose to research. Who gets to make those decisions about what science is and what's important are deeply connected to the cultural and social dynamics of our society. And when it comes to who decides what genomes are important, what is genetically desirable, that steeps into our society as well.
Not only that we live in a country that doesn't have that many scientists of color, women and/or scientists from economically diverse backgrounds and regions, particularly when it comes to genetics, and the field is overwhelmingly missing the diversity of people and thoughts that are needed to ask some of these important questions. Which also brings me to my next point. Science doesn't live in a bubble.
I mean, we've all heard the framework of science, neither good or bad, it's how people use it. But I want to challenge us and interrogate that notion, and add what are the ethical and moral obligations that we should be thinking about when it comes to how science is used? Which is particularly given that we do not require many of our genetic scientists or the folks steeped in the real STEM scientist's worlds to have a deep understanding of the social sciences or community experiences. Should we be asking them what the potential technologies are and the impacts of those? How are they working and thinking about the development of what the end use could be, and the impacts of those while that, and how are they working with community in those pieces?
There are two things though that keep me up at night about genome editing, and one is the standard for social ills, and two is the idea about playing God, which was talked about a little earlier in different ways. So what do I mean by social ills? Many times, our focus in science is making people more resilient, then creating a society that relieves some of the stressors that cause harm. If we are able to make people faster, stronger, able to survive without water, all the things, that does give us an excuse not to actually correct the things that are totally correctable. Does genetics give us a pass for actually solving racism and sexism and inequality? Or does it gives us a pass from not dealing with climate change because we have created stronger people which leads into space? And that we are not actually solving these issues.
And so that's one of the things that I think is really important when we start asking the questions of why. The other piece is that this small group of scientists and the geneticists, who we already talked about, who are not exactly the most diverse group of folks, who aren't thinking about these conversations, are literally the ones who would be deciding the history forward or the path forward of homo sapiens, of the human race. And so when we think about permanently changing our genetic code, and that gets passed down to our children permanently, we have not nor do we know all the complexities on why we carry certain genes and why we don't do and don't have different things that are passed in our genetic code. And so there is a deeply troubling issue or deeply troubling factor around thinking about that a small group of folks would be charging or thinking about how we evolve as a species.
Lastly, why this is such a deeply reproductive justice issue, is that our society right now still suffers from the incredible amount of isms, racism, sexism, transphobia, homophobia, economic inequality, white supremacy. I can go on and on. And when we think about our ability to choose your child's skin color, hair color, if they're more inclined or interested in the opposite sex, and all the other pieces in today's society, for a designer baby, all those things get put back into, or starting to think about, and something that we should be thinking about the framework of what today's societies are... excuse me, what that looks like when we're thinking about babies, and that do we want today's standards of what's good be what is dictating what tomorrow, and hopefully a better world, and what we should be thinking about.
Lastly, for kick off our conversation, I want to bring it back to Star Trek and leave you with this. So Geordi La Forge, who is the chief engineer of the Flagship Enterprise in the TOS series, he's a black man, he's blind, he's in the fictional world of Star Trek, but he gets to exist. And I want to say that he gets to exist with also being blind. And so what Star Trek did was fix the technologies around him to be able to make it possible for him to do his job and live a full life without changing who he technically was, or his ability to be able to function with not being able to see like the rest of us. Or not the rest of us, but with folks who I would say... what would be the proper way to say that? Not see, what is considered the correct way or the healthier way of vision. Y'all help me clean that up later.
But I give that with a sense of, which is when we're thinking about this technology and what our path forward, we should think about with the Geordi, do we want a world that we have technology that makes sure that someone like Geordi is being able to have full lives, or do we want the technology that Geordi technically never existed? And so I want to throw that conversation out for food for thought, as we think about the reproductive implications and the moral and ethical obligations that we have when thinking about genome editing.Osagie Obasogie:
Thank you so much. And next up we have Karen Nakamura.Karen Nakamura:
Hello, everyone. My name is Karen Nakamura. I am a professor of anthropology and the distinguished chair in disability studies at UC Berkeley. I am a middle aged gender queer and queer Asian American person, with graying hair, calling in today from the occupied land of the Huichin Ohlone and other tribes in Oakland, California. And I want to recognize that we exist still on unseated land.
I also identify as disabled, and my comments today will follow in that line. One of the questions I have is whether or not we can view disability, and in these conversations that we're having about disability and the possibilities of CRISPR to edit out many forms of disabling conditions, not only for the individual themselves, but for all of their descendants, and perhaps in future eliminate particular conditions for all of humanity.
Can disability be seen as value neutral? Can it ever be seen as an aesthetic choice, rather than purely as negative difference? What happens if there are communities or individuals or couples who wish to choose disability, not only for themselves, but also for their descendants? And where do we go when we try to understand where principles of disability as aesthetic choice, principles of disability justice, which draw much from principles of racial justice and other forms of justice movements. And I really want to give a nod to my colleague Nourbese for making really important, critical comments in regards to the importance of intersectional justice here.
And so I think these questions drive how I really try to understand the possibilities for CRISPR. So the first one is whether or not we can choose disability, or what are the ethical principles that might drive choosing for disability. And this has already been done prior to CRISPR with pre-implantation testing. Such as we have activists in Japan, Asaka Yuho, who has osteogenesis imperfecta, OI, and her choice to give birth to her daughter, Umi, who has OI. She was dissuaded heavily by Japanese doctors to not give birth because of her OI, and yet she argued that if there's anyone who is able to be the parent of a child with OI, it would be myself because of my lived experience. And both she and her daughter Umi are activists for disability rights in Japan, and their relationship is also a complex and difficult one at times.
And so to think through what does it mean that one might choose to have disability, one might choose to have a child that looks and experiences the world as you do, as being one of the things that parents often want, right? We want children who are like us in many ways, but often that is in the context of non-disabled people choosing non-disabled children. We also have a case in Russia, of a couple who wish to gene edit, in this case, for deafness. And so if we move beyond sort of pre-implantation testing, can we or should we allow couples who wish to have a child, to create a child, even if they do not have a genetic condition which might lead to deafness, to create a child who is deaf, so again, that child experiences the world and deaf culture in the way that they do.
And I'd like to flip the question on its head, because it flips all our assumptions, right? Our assumptions are normally that what are the problematics of non-disabled people choosing non-disabled children? Well, are they problematics, or is it purely beneficial for disabled parents to select for disabled children? And part of people's hesitance around this is because we view disability as purely a negative, right? That surely no one would want to select for disability, or surely a disabled life is not as rich and full and as full in potential, as an able bodied life.
And Elizabeth Barnes and others have really pushed against this, that we can perhaps have a value neutral model of disability. And deafness is one of those unique ones, where the deaf community, because of its history of advocacy for deaf culture, has really been able to push this notion that deafness is merely cultural difference, merely linguistic difference, and does not have some of the negative consequences as some of the other disabilities. And they like to present that as unique, and we often have more empathy of seeing deafness as merely linguistic difference.
But when you actually enter into different communities, we see similar things. So within the psych community, there are numerous people within psych community who are also pushing for this notion of, whether it's hearing voices, whether it's this notion of psychiatric disability as being a gift that we receive, a problematic gift that we receive, that we need to figure out how to handle or so forth, that disability has benefits as well as some drawbacks. And some of the drawbacks are because the world is not designed for us.
So these are some of the questions that we have, that drive, right? So if we argue that, for example, being bipolar has many benefits, and one would wish for a child who was also bipolar, or one would wish for a child who also heard voices, or one would wish for a child who also experienced the world not through visual sense. And this is where I particularly like Nourbese's vision of the future as reflected in Star Trek, of many people would now think Geordi La Forge, a blind person in the 24th century, would he exist? Would it be possible for a blind person to exist in the 24th century? Or would we have both edited out of the genetic conditions that might cause blindness as well as all of the sort of pediatric conditions that might cause blindness?
And so this notion of, I think for many in the disabled communities, is like, yes, we can see ourselves in the 24th century as existing and flourishing. I think she had a very important intervention there. One of the things that the disabled community wants to draw, is this question of what is an aesthetic condition that one really shouldn't select for? So often there's critiques of, oh, we shouldn't select for height, or we shouldn't select for hair color, but it's perfectly okay to select for, oh, we don't want children who have sickle cell anemia, or we don't want to select for children who have gay sex, and this notion that we can have a bright line between those two.
One of the ethics cases in disability that I wish to bring up for this would be the case of Ashley X in Washington, who was a young adult, who had multiple disabling conditions. And her parents wanted to essentially do surgical and hormonal intervention, to freeze her body to that of a young child, a pre-pubescent young child. They removed her ovaries, they removed her breast tissue. They hormonally injected her so that her bones would stop in size, so that they could forever care for her in the body of this sort of eight year old child, a pillow angel as they called her, so that she'd be easier to care for, and that she wouldn't be sexualized by future caregivers after her parents had passed.
And so they argue that these were not aesthetic choices, but these were in fact physical choices, right? That not having menses would help her, that not being sexualized would prevent her from being sexually attacked in a care facility, and so forth. And yet the depiction of her as a pillow angel by her and by other parents who have gone on to create a pillow angel movement, really show that, no, these are much more aesthetic choices, right? There's this aesthetic of the disabled child that is much more accepting than the aesthetic of a disabled, fully sort of sexual being, who has perhaps multiple intellectual and cognitive disabilities.
So the question that the disability community moves forward into, and the one, again, that Nourbese really hints to with that image of Geordi La Forge, is disabled people have difficulty fitting into worlds that are not built for us. And how can we resolve that? And the resolution is often to fix the disabled people, but can we fix the world itself? And we realize the challenge of this, and this is really where we have to tie into our brothers and sisters and other siblings and various justice movements. That the core problem is that we exist in capitalist society, where work value extraction is the sole means of worth, right? How much value can be extracted out of you. And to what degree can you fit in as good cog in the system, determines your value as a human being, whether or not your life has worth, is worth living, and whether or not the life of your descendants is worth living.
We fundamentally need to change that capitalist equation so that people are valued on different means other than their sheer work value or their ability to fit into the capitalist system, if we really wish to change into a world where we can all exist in the bodies and in the minds that we choose to. Now, in the Star Trek universe, that's only possible once they move past capitalism. And perhaps that is the solution that the future holds. It's much more problematic, I think focusing merely on CRISPR can lead us to forget that this has been a question that has existed for much longer, even before pre-implantation genetics, and ties into a long history of eugenics. Thanks. Thank you.Osagie Obasogie:
Great. Thank you so much, Karen. So we have about five minutes for questions. So we'll start off with a question for Francoise. So what is currently going on in policy discussions about heritable genome editing? So what do you think about the prospects for robust and meaningful public engagement?Françoise Baylis:
I think there are a number of individuals that are making that claim consistently, that one has to engage with civil society. It's not clear to me how well that's being heard. And what I mean by that is that people are aware that... or at least people in power are aware that not everyone agrees with them. And yet at the same time, they find it difficult to create, I think, spaces where people are on equal footing, sharing their views, which may not be in agreement. So I think one of the things that's clear is, in my presentation I made reference to the second international summit on human genome editing. There will be a third international summit in March of 2023. And I think that it will be predominantly scientists speaking to scientists.
And one of the things that it's important to recognize is that it costs money even to have a meeting. And so it becomes very difficult to imagine, at this stage, how we can have a broader conversation. In my own work, I've been arguing for this notion of broad societal consensus as a way to sort of say it has to get outside the scientific community, the policy community, the business community, that the prospect of taking over the human evolutionary story is so significant, that we have to actually find new ways of having meaningful conversation that all of us can participate in. And I have said, and I will continue to say, it's a metaphor, but the human genome belongs to all of us. It's something we have in common, and so we all have the right to have a say,Osagie Obasogie:
Great. Thank you. And a question for Nourbese, from Harley Custer. So do you find that researchers, such as bench scientists working in preclinical areas and developing interventions, are reluctant to think about social and ethical implications? And I think that's a question we can broaden to the other panelists as well.Nourbese Flint:
Yeah. Where to start? I think this is a conversation really. I think folks think about maybe the first layer of social and community impact, but not really doing the deeper dive in the sense of thinking about what are the two, three, four layers of it. Right? A lot of times that in my experience it's been marketed to or talked about in a way that this is going to help communities of color, by evening up the playing field or being able to "get rid of certain things that are harmful to communities of color", that more folks in the community of color are experiencing, but not really thinking about what is the ethical and moral obligation to think about how science is implemented in this full space. Right?
So what do I mean by that? Do they ask the question, is this a need, or is this something that actually can be solved by society? Are we trying to make people stronger or are we able to be resilient to something in society, as a way to not fix what is happening in the society?
And what I would love to see in the future for many scientists, is that they are required in their studies to actually do the deep community work. So not like we're doing a community participatory type research, but actually be embedded in community, have conversations, think about the different pieces of how we all function and live, before we start actually building science to solve problems for those "communities." And I think that changes the questions, and it changes what we are looking at in the research. But all in all, I think, yeah, there is a reluctancy, and I would love to see more of those ethical and moral questions go beyond the kind of superficial pieces of like, I think this will be good because I have decided in my brain that it will make it be good, and I have backtracked it what those facts would be.Osagie Obasogie:
Great. So we have one more minute if other panelists want to address that question?Karen Nakamura:
Sure. So there was a comment from the audience about Iceland, and it's a claim about five years ago, that what they had now eliminated down syndrome through genetic prenatal testing and forced abortions. Well, not forced, but they encouraged women to have abortions. And this came out about five years ago. We don't have strong data from the US, but one of the few places that had some data was Hawaii, where they also showed that about 97% of women who had prenatal testing for a variety of conditions, including down syndrome, would elected to have abortions after they had their fetus tested for down syndrome.
So we already have this brave new world where we are selecting against particular genetic conditions. There is also the fear, and it's unclear the degree to which it has actually manifested, that many insurance companies. So here we have public health operating in a particular way for selective abortion, but we also have insurance companies. And we hear anecdotal reports in the US that insurance companies will not cover the costs of a child if prenatal testing indicated that that child had a condition that could have been terminated early on, and another sort of fetus selected.
So that if the parent decided, for example, to continue with having a child with down syndrome, that the insurance company, which would often cover the pediatric care costs of a child with down syndrome, would no longer do that. This may shift with legislation, and I think legislation's clearly important in this case, but it does raise these questions that insurance may be a driver. And we really need to pull in, and especially in the US, where private insurance is covering it, into these conversations. Because it isn't purely just bench scientists, and it isn't clearly just the medical complex. It's also insurance. It's also a legislation. So I appreciate that comment, and it is a troubling future that is just emerging in other places.Françoise Baylis:
And if I can just jump in. For people who are interested in this issue, I would recommend a book by a colleague of mine, Chris Kaposy, called Choosing Down Syndrome, where he really talks about the ways in which the kind of genetic counseling that's provided to people who get a diagnosis of a particular condition, really pushes them in a particular direction.
And this is in a context where it's supposed to be non-directive counseling, but it's not just the individual counselor that kind of is pushing, but it's all of society. It's created expectations and norms, and women are not stupid. They hear this and they hear it subtly, even if they also don't hear it overtly from things like the insurance company.
But anyhow, Chris has a wonderful book called Choosing Down Syndrome, where he talks about the inability of too many to see all that children with down syndrome, who become adults with down syndrome, contribute to society, and that it's our failure not to see and embrace those children and those lives. So just a recommendation for anybody who's interested in that topic.Osagie Obasogie:
Great. Well, thank you so much for those comments. And I want to thank our panelists for all their thoughts throughout this past hour. And I want to thank and congratulate Meghna and Nairi for their brilliant essay or policy brief that they put together on this topic, and I encourage everyone to go to the Othering and Belonging Institute website to download the full report, titled Engineering For Perfection. Thank you so much, everyone, and we'll see you all soon.
