CRISPR Consensus? Session 1 – What Is at Stake, and Who Are the Stakeholders?
Hi. Everyone can, you hear me just. Want to let you know what's going on we're just waiting trying. To fix some online. Stuff we're just gonna start a little a slightly late and will compress, the lunch to. Make up for the time so give. Us another five minutes and, and, then we'll start so I just want to let you all know what's going on continue, talking amongst yourselves. Are. You. Okay. Forgive me. Check. One two three, four five six seven eight nine ten. All. Right Gregor can you hear me. Yes. Yay. We're, good thank you. All. Right if everyone could take their seats we'll start here in a second. All. Right so. Hi, everybody, welcome. And, thank. You for making the last-minute change with, us and being patient with, all these technical issues and. We've. Got all, of our speakers here, that could make it and I think we're gonna have a great, symposium. Regardless. Of the last-minute power. Issues, and having the change room, um I. Know there are some people streaming. In on YouTube so hi YouTube, and. Those of you that are on a different, time zone we. Hope that you'll be able to check out the. Recordings. That we'll post to our website, afterwards. And host some of your own conversations, based on what you hear today and so. We. Are currently in a, loaned, building, but. This, event. Is hosted. By the innovative genomics, Institute at, UC Berkeley were a partnership. Between UC, Berkeley UCSF, and the, Gladstone, Institute, and we. Were founded by. Jennifer. Doudna just. A few years ago, with. A mission to develop a deployed, genome, engineering to, cure disease ensure. Food security and, sustain the environment for, current. And future generations um. Nope. It's not gonna let me do that and. So. The, event, today is an. Co-sponsored. By the. IG I here, at UC Berkeley as well as ASU, initiative. On. What. If I just posit, let. Me do that okay. We'll do that and. The. IDI and, the ASU initiative. On science technology and human identity, at Arizona. State University and, it's. Also been co-organized. By the Keystone Policy Center and. I wanted to especially thank Ben. Hurlburt and Julie Shapiro for their help in organizing this, it's been quite. A push especially in the last little bit just given the issues so, thank, you both, and. To. The IGI team for pulling some very, it's night, last night tryna get this all sorted, out, and so. We. This, whole event is the. Final, in a series of events it's, been sponsored. By a grant, from the Templeton, Foundation to. Jennifer. Doudna and, Bill, Hurlbut, who will be moderating. The last panelist you'll meet him soon and. We, just want to thank the Templeton Foundation for their support in this very, important, topic. So. At. The IGI we you, know we're life, sciences Institute but, we also recognize the importance, of. Battling. You know weighing, the, way the science fits, into society, and, for that we're conducting, research and, we're committed to public engagement and stakeholder. Engagement on these topics and what. Topic is more important. At the current moment then. Editing. The germline so. What. We're doing here today is not so much a referendum. On yes or no but really, trying to address some of these bigger questions about, how, do we involve, stakeholders. And publics and these big conversations, so, to get, this started, I am, going to hand it over to Ben. Crowell but who's going to tell you a little bit more about that charge what we're trying to accomplish today and. Then. We'll get everything. Started. So. Thank you very much to all of you who are here today many of you have come from far and wide so. We are most grateful for your participation, I'm. Just gonna say a few quick words of framing to get us started, um so, as Lee mentioned the sort of occasion for gathering, us together here are the developments.
Of The development. Of very powerful tools of genome. Editing and. In particular a tool called CRISPR caste 9 where foundational. Work for the for the development of that tool was. Done here at the IGI. This. Technology. Allows targeted. Genetic modifications. Of just about any being from, microbe to mammal there, are myriad. Extraordinary. Promising. And hugely valuable applications. Of this technology and, of course there are also those that are a fraud and perhaps. Amongst. The most controversial, among these is the potential, to modify, human, gametes, and embryos, to introduce genetic changes, into. Children. Heritable. Genetic changes. Changes, to the germline that, would be passed on to, not, just to those children but to those children's, children, and on, down through the generations, so. This ability to make genetic. Changes, to the DNA of future children raises, far-reaching, ethical, questions should it be done for, what purposes, and subjects, what limitations, but, just as crucially, who, should decide these questions how. Should we as a human community guide and govern these emerging, technologies, a, few. Years ago a, group, of leading thinkers, convened, an international, summit on human gene editing and concluded, that we, should not proceed until there, is as they put it quote broad societal, consensus. About the appropriateness, of. Of. Its use and for what purposes, those. Words have caused a certain amount of controversy not, least because there's uncertainty, about what such as consensus. Would look like and. And, a skepticism, that could it could ever be achieved hence, the question mark next to consensus, and the title of this gathering, these. Are both important questions and yet seeking. Such, a consensus. Or at least engaging in the kind of broad deliberation. That might move us in that direction is surely. A worthy, aspiration and, it's, in that spirit that we convene, this conversation. To. Contribute, in a small way to a, larger, imperative. A larger, effort to to, develop sort, of broader more expansive. And more inclusive dialogue that. Draws upon the breadth of human experience. And moral imagination, and. We're. Facing real challenges, scientific. And technological advances. Are proceeding, often without guidance from wider society, about what technological. Futures we want and what we what futures we don't want, as. I'm sure everyone in the room knows last, year scientists in China created, the first genetically, engineered, children, his, aim was apparently. To, race ahead of his scientific competitors, but, also to reshape, and speed, up as he put it the, ethical, but. Speed is surely, not what we need in this case we, need thinking, and reflection, and deliberation. Informed. By the fullest, range of cultural, and moral and religious perspectives. After, all the human future is at stake and. Yet to. Date most of the discussions, that have informed, governance, approaches, surrounding, genome editing have, played out in expert committees and summits that have engaged a relatively, limited range, of perspectives, these have been worthy and important, efforts and yet insufficient. And incomplete. Surely. Expert, input plays, a absolutely. Crucial role in governance, but. As multiple. Expert, committees who have convened these conversations.
Have Repeatedly. Affirmed, expert. Judgment is insufficient. We. Need a broader, more, inclusive, dialogue but. Questions remain how should public debate proceed, through, what mechanisms, and processes who. Should lead and shape it and even, where it's taking place how should scientific, and technological agendas. And governance. Approaches, be tethered to public deliberation, and judgment. Lest. One or a few reckless, scientists, take the reins from the rest of us so. Our task today is to confront, these challenges and explore, possible, paths forward we. Have, the privilege of. Engaging. In a dialogue about, how to guide and govern these. These, emerging. Technological possibilities. Through. A dynamic, and, and, quite. Diverse group, of participants in, a public conversation. That. Will draw upon the expertise, of a range of, interdisciplinary. International. Range of people from around the world. But. Also that. We hope and we intended, would include a much broader community, in effect anyone who wished to to, accept, the invitation to come and participate in, the, dialogue so. This was meant to be a very public affair with. A much larger gathering. Of the public, in. The spirit, of the project, of this meeting. Unfortunately. We had a little bit of a lesson and who has the power to shape debate and it turns out it's it's, the power company. So. So, I think, as as everyone, in the room knows and and P who are tuning in from afar maybe, don't the. Local, power company, Pacific, Gas & Electric is, deemed today to be the day that it will turn off electricity, to the UC Berkeley campus so, we were supposed to have gathered in a much larger room, there, were roughly 200, people members. Of the public signed up to come, and participate in, this discussion so it's a it's a it's a sort, of shame and irony and even absurdity, that we've had to exclude, that public, that this this, gathering was intended, to. Include. And. Yet nevertheless. Fortunately. The web remains with us what, would we do without it and so, at. Least judging from our numbers of the people who signed up there are another sort. Of 250, people or so who promised, to tune in and, we hope you are with us we, encourage you to stay with us there, are mechanisms that, I think Lee will will say a bit more about for participating. In the discussion. You. Know mediated. Unfortunately. By the. Technological. Means of participation, we would much, rather that, that there were more people in the room but so it goes and.
So So we are really going to rely upon you those of you who are out there in cyberspace, to. Participate. And contribute to our dialogue. One. Other quick thing so we were one. Of the sort of there, multiple at complex, inter. Woven, choreographed. Elements, to this meeting all of which have been profoundly disrupted by PG&E but. Nevertheless one. Of the elements. Of this, meeting. Was was, a collaboration. Between, the. Organizers, and and tomorrow. Life which is an emerging project, to create a kind of online video, repository. That will, kind of capture and contribute, to conversations. In this domain and, so we will hear a little bit more about that from the leader of the project Samira, kyani during, this during session. 3 but, there is a film. Crew here who. Was meant to capture the conversations. Both, among the invited experts, and among the public that would unfold in the coffee breaks and our big and open space. And. So we're gonna sort of play it by ear what. They will do and how they will do it but nevertheless they, are here, there. Are cameras float and, insofar. As you, have, thoughts that you want to share. Conversations. That you would invite others to listen, in on to, eavesdrop on on we, invite you to find, that camera crew or if they come up and approach you and stick, the camera in your face to welcome it and, and, you, know recognize that the, things that are said here are in the spirit, of sort of building collective, dialogue and that. This platform can serve as a means to to. Invite. More people into, the space of conversation. By. The way if, you, haven't noticed, the releases. The, the, notices, that are posted around saying you, know watch, out you're on candid camera that, probably dates me but anyway. They're. There so please. Take note that anyone. Who's here. May, land. On film and if you have concerns. About that please, do make them known to the film crew and to the organizers. Finally. I want to reiterate some, thank, yous. First. Of all to our sponsors, in to to, the co organizing, and hosting. Institutions. But, also to the range of people who have been involved in pulling this thing together. And. I'm just going to read off the names because each of these people have put in crucial, efforts, Megan, Hawke Strasser, Kevin, dozin, Stephen, Crane Dana Carol William robot, Lorri Perko Christy, nordhal, Yulia.
Gloob, Of, skaia, how did I do. Anyway. Sorry Yulia. Susan. Jenkins and, then most, importantly, my. Co-organizers. Julie, Shapiro, from from, the Keystone Policy Center and. And Leawood, Kowski, whose incredible. Heroic, efforts to salvage. This thing over the last 12 hours. Are. Really the only reason that we're all here and not you. Know dispersed. Wandering, around doing. Our own thing, so. With that I'll turn it back to Lee. All. Right, thank. You all um. So, this slide. Presentation, that seems to continue, to assert itself on, us is, my next charge here so, before. We get into the first session and we wanted to kind of bring everybody up to speed on the, science that we're talking about here today it's, gonna be very minimal there's, actually not a lot of science that you need to know to be able to participate in this conversation but. We want to make sure that the terminology that you might hear today is. Something, that that you recognize and are familiar with so, to. Get started let's. Quickly. Go over some basics, of what. Is this genome editing thing that we're talking about so. There's. An analogy, that I think is very useful to use and you, can think of a genome as a book. Of instructions and, it has all the information needed, to create, an organism. It. Is, organized, within, that book into chapters, and sentences, or you, can think of that as chromosomes, and genes. Genes. Are the sentences, that contain, a, full. Individual. Instruction, about one part of creating the organism, that. Terminology. In the book the language is in DNA, chemical, bases and. So you may hear some terms, like genome chromosome, gene, DNA, that's. What we're talking about today and the. Editing, mechanism, there's many different sorts, the kind that we're. Probably going to talk about most today is CRISPR. It's the the new exciting. Version. But there are also different. Ones and I'm sure there will be more to come. The. Idea, with genome, editing is that you, can actually target, that. Sentence, in the book that, you want to target and make, some modifications to, it so if there's a mistake in the way it's written and you have a mutation, you. Can target it I don't by it and correct it sort of like a find and replace function. If, we were to translate this from a paper book into, an electronic, version. So. That's the general concept, is this ability to kind, of rewrite, the instruction, manual and. And. Beyond. That there there's, some other terminology that you might hear like, somatic, cells and germline cells so. The thing that we're focusing on today is this concept, of rewriting, the, instruction, manual the genome of. Germline cells. The. Distinction, that we're drawing here is one that is very useful but it's also one that you might hear challenged, today, it's, one that I think we should consider a little bit further um but. To define them somatic, cells essentially, are the cells in your body of, an existing, person. That. Have often, been differentiated. To, be things like skin cells bone, marrow cells, adult. Stem cells so they can also, be. Created. Encouraged. To divide. And become new, types of cells but these are our cells that cannot create a new person, by themselves. Germline. Cells on the other hand are things like eggs sperms. And embryos and the progenitor cells that create, those and so, the distinction here is that if you modify, the genome, of a somatic cell. That. Modification, will. Stay with that one person that you made the modification, in whereas. If you modify a germline cell, that, modification, will be passed down, both. To the person that will be created from those germline cells as well as to all of their descendants, so, there's something a little bit more profound, about, modifying.
The Germline and that's what we're here to talk about today. So. Um with. That let's go into a little bit of ground. Rules. Use. This mechanism so. As you. Can imagine this is a very controversial, topic so, you are going to hear lots of different, worldviews. Lots of different perspectives and, takes on it. We. Are welcoming all of those here today so in order to have a productive, conversation we. Have some of these guidelines for how to engage this topic so be. Empathetic assume. That, even if you disagree, the person is is approaching, this with good intent be. Curious dare. To listen so dare to try, and understand where somebody else is coming from engage. Fully. Disagree. Respectfully. And. Dare to disagree so we want to hear different, perspectives, share. The floor so be when you do come up to the microphone and you want to ask, a question please be, mindful that there are others that might also want to share, the floor with you, create, common understanding, so, even. Though I just define some terms let's, do our best to avoid, some technical jargon so that we can, speak. To everybody, and. Let the, emcee me leave it Kowski and. The, moderators, will have a timekeeper, sitting, over here do. Their jobs so we're here to spark conversation. So. There's. One other group. That I wanted in. The spirit of engaging. Different, worldviews, and different perspectives, and. We've. Heard a lot of recognition, and thanks for the organizers and and, for the Institute for East Asian Studies which is hosting us today it was very kindly offered their facilities. But. I also want to recognize that Berkeley, sits on the territory, of the Queen. And I'm hoping I'm pronouncing that the, ancestral, and unseeded land of the aloni people. This. Land was, and continues to be of great importance, to the Ohlone people and we recognize, that every, member here at Berkeley. And the community has continued. To. Benefit from the, use of this land. So. Consistent, with our values here of community, and diversity we. Wanted to affirm. Indigenous, sovereignty and acknowledge and make, visible the university's, relationship, to Native, and. So. To. Get started, and we. Are going to be using something called pull, everywhere, and if. You imagine this, big auditorium.
Where We would have had all these people, sitting. In the audience this would have been a wonderful way to get everybody, sharing. Their. Perspectives. We're. Gonna do that still because we. Want to hear from those of you that were able to come, today and. There, is a version on, YouTube. That's being posted where you all can join. Us in input, your. Your. Opinions, and your perspectives. So. Those. Of you that have, some. Sort of device with. Wi-Fi and, we, have Cal, guest it's a free Wi-Fi here you can log into that and. If you want to navigate, to, at, the very top it says poll evey calm, /i. GI poll and, go. Ahead and enter your responses. So the question is what, issues, drew you to this conversation, today so let's set, kind of the frame of why everybody, came here today to discuss this topic and, you'll. See that some of the words start popping up as people, enter them and I'll just give it a couple moments. So. We're seeing technology. Change. The world, ethics, future. Access. Equal. Dialogue, stakeholders. Power. Change. Eugenics. Groundbreaking. Dialogue. Oh yeah, now again in some way lots. Of words ah ethics, is coming to the floor. All. Right justice. Public's. Generations. Inclusion. Children. So. The big, ones right now are dialogue, ethics, and society, so, that is exactly. Appropriate I think for today, so. Let's move on to. One, more to get a sense of who all came, into the room with us today. So. Here's, the next question what with what field or study so we know that not everybody here is academic. But what are you most familiar with what. Sort of knowledge do you most identify with, in this category. So. We're seeing lots, of life scientists that's great I'm glad you're, all here to have this conversation with, us social. Scientists, and humanities. Coming. Up as a major second, and other. That. Will be really interesting to find out what other is later and we'll be posting the, results of this, after. The conference is over so you can all look. Alright. I've. Been told that I'm being too loud. Great. So. We. Will go to one more um. I. Believe one more is that right Kevin. Sorry. Okay and so. This. This, first session this first, panel is about the, stakes and stakeholders. So. Before we jump into that let's get a sense of what everybody in the room sees as the stakes when we're talking about governance. Of germline, editing so in one to two words, what. Are the stakes that we're here to talk about in your perspective. If. We get the Wi-Fi. It. Is. PG&E. Do. We have an Ethernet maybe, that would work even. On. Your ELLs okay, all, right well we'll we'll, see if we can do this again later um, so. That. Brings us if it's not working that brings us straight to our panel so if we can have the panelists, on the, oh oh okay. Let's. Wait, okay. Give. It a second, okay. What's at stake, how. Am I on the mic is this better okay. So, the the major themes here are future. Humanity. Equity.
Trust, Power, many, of the same things that everyone answered of why they came to the room today these. Are the, things that are at stake is why you came. Humanity. All. Right all. Right so let's go to the next question, if it's working. So. What, issues, in human, health and reproduction, need. To be informed, by the public, so, again today we're we're here to talk about the. Engagement, aspect of governing, this not as much about should we or shouldn't we but how do we make that decision and how do we involve the appropriate, people so, what, issues, do. You see as. Being needed, to be informed, by the public. Human. Welfare, everything. Access. All cures. Who. Decides. Boundaries. Just. Give it a couple, more seconds, to see what else comes in. Patient. Voices. Economics. All. Everything. I think. Lots. Of all all. The, issues in human health need, to be informed by the public access. Issues. The. IG high poll needs to be. Uh-huh. Yeah. Humanity. Irreversible. Change. What. Counts as a disease definition. Of disease disability. Justice. Understanding. Of human health should be informed. By the public transparency. Everything. All. Right. Eugenics. Should be informed by the public. Getting. Rid of politics. It's. A big ask their. Policy. For applied research. Autonomy. Alright. Great. So let's. Go. To the next one. So. That was what, should be informed by the public so what issues in human health and reproduction. Should, be reserved, for experts, to decide. Their. Yeah. None. And. I'll note if if our, invited. Panelists, and speakers haven't, already realized you you can participate to. Bio. Informatics nothing. Safety. Eugenics. Science. Science. Should be reserved for the expert safety, should be reserved for the experts. Limits. Safety. What. Goes on in the test tube is the domain of experts. Technical. Risks. Nothing. None. Technical. Feasibility is, safety and efficacy. Public. Education, should be reserved for experts. Collateral. Damage. Scientific. Details. None. How, do we define experts. Experts. Get to define experts, and. Tech. Evolution. Common. Values. Methods. Whether. Or not to have strawberry, cream cheese at lab meeting mm-hmm. Boundaries. Nothing. Methods. Okay. Alright, there's, one more question. And, we. Will leave this up in the, background I believe no we're not going to do that and we, will come back to this at the end of the panel so. All. Right so that's how the, polleverywhere works and we'll do that at, the beginning of every session to kind of get a sense of what. A where, everybody is in the room and we'll come back to this at the end of the session. So. First. Session if, we can have all the speakers and our, moderator so. Sharon, Begley, is. Moderating, she's a senior, science writer from staten news. And. Keola, fox is assistant. Professor of biological, anthropology at, the University of, California, San Diego and, an, indigenous rice, rights activist, um. Billy. I'm. Gonna mess. LeeAnn. Lou um, is. A genetic, counselor at the University, of California, in San Francisco. Gregor. Wolbring will, be joining us via, zoom over there hopefully we got that sorted out gregor can you hear us. We. Don't have him we'll attempt to fix that um he, is associate. Professor in the Department, of Community, Health Sciences. A stream. Of community, rehabilitation and. Disability, studies, in, the coming School of Medicine. At the University of Calgary Alberta and. Mohammed. Gali professor. Of Islam and biomedical, ethics at, the, Research Center for Islamic, legislation and. Ethics, College. Of Islamic. Studies at Hamad. Bin Khalifa, University. Great. Alright so while they get miked up ah we. See Gregor Gregor, can. We hear you. Not. Yet she's here she's gay okay, yeah yeah no worse. All. Right so do we want to Sharon do you want to check, here Mike. I'm. Not sure if the room can the room hear you. Okay. Good morning that sounds quite, much louder okay. Do. We want do other mic checks yeah why don't we do everybody, on the panel first let's, just go down. Aloha. Morning. Yeah. Hi. No. And. Gregor. You want to give it a shot. Sure. Hi. We. Can hear you the best of all. Yeah. Okay. So good, morning everyone and, my thanks to the organizers for, getting. Me out here I look forward to the entire day. Setting. In material, so. As you know our our. Topic, for the weekend, is CRISPR, consensus, question. Mark so. Much is packed into that question mark is. A consensus. Possible, how, would we achieve it how, would we recognize it if there is a consensus, how would we recognize it if we fail to achieve a consensus.
But. Certainly one of the elements, to achieving a consensus, is to recognize, what the stakes are and who, the stakeholders are, who, should have a voice in the discussions, that been, outlined, for us at, the beginning of the day I want. To start with just two anecdotes. To give I hope, a sense of the range of opinion, that is out there. One. Comes from a new. CRISPR, documentary, it's called human nature it's. Been making the rounds of, film. Festivals, but is not yet in commercial. Distribution. One. Of the people in human, nature is, a young. Man he's, a teenager, he. Has sickle. Cell disease he. Is in the clinical trial that is attempting to. To. Cure, his sickle cell disease it's, somatic, editing. As, Lee explained to us not germline, editing, but. Toward the end the. Filmmakers, asked him so. David one, day it might be possible if, you were to choose to have children for. Your. The. Embryos, that you, and your partner, make through, IVF. To be. Changed. So, that the sickle cell gene that. You have would, not be passed on to your, children what, do you think about that and again, this is a teenager, and. He thought about this for some minutes. And then he said you, know I can see how that, might be desirable, and, how some, parents. Or future parents, might. Want to go in that direction but. For me, he said I don't. Think I would be the person I am today if, I, did not have sickle, cell so. I leave you with that thought, another. One is in. One. Of the stories I did about germline, editing I spoke to a number of parents, families, who. Have a rare genetic disorder. And. As. We might get into later many. Families, who have. Heritable. Genetic disorders. Can. Avoid, passing, those disorders, to their children, if they, choose to go have, assisted. Reproduction, and priam, plant pre-implantation, genetic. Diagnosis, to, select out embryos, that carry the disease causing, mutation, for. A few, families. Depending. On very complicated, patterns, of inheritance, it. Will not be possible to do that to have biological children, who.
Do. Not carry the disease-causing, mutation. So. Again. I was speaking to a, mother, actually and, we were going over some of the. Scholarly. Ethical, other arguments, against germline editing. Many. Of which I think you'll hear this weekend, and. And one of them was the idea that the human gene pool pool, is the common. Inheritance. Of humanity, and she. Said, she. Totally gets that it's a huge decision but. Can't. I just change my little. Drop of the, human gene pool so that, my children don't have this terrible thing that I have. One. More not, a story but sort. Of a variation, on an old joke about, how we achieve, consensus. And then how we implement, it there. Is the old joke about, democracy. Cannot. Two. Wolves and one. Sheep. Voting. On what to have for dinner. So. As, we. Proceed. Let. Me introduce our panelists. At, my. Far left is Mohammad gali he's, professor of Islam and biomedical, ethics at, the Research Centre for Islamic. Legislation. And ethics at the, College of Islamic, Studies at Hamad, bin Khalifa University. His. Work focuses on the intersection of Islamic, ethics and biomedical. Sciences including. The ethics of human germline, editing. Next. To him we have Kyoto, Fox whose, assistant, professor, of biological. Anthropology, at UC San Diego he. Is also an, indigenous, rights activist, and his, research focuses on, questions, of functionalizing. Genomics. Which, involves, putting to the test theories. Of natural selection by editing, genes and determining. The function of the mutations. Using. Genome, editing technologies. He, examines, the effects of genetic variants, assumed, to be under natural selection such. As thrifty genes and Polynesians. Next. To me as Billy. Lee Angelou who. Is a genetic, counselor here at UC San Francisco. Billee specializes. In prenatal care working. Closely with perinatologist. S--, to, educate families on potential, genetic risks, for fetal abnormalities. And inherited. Disease and. Remotely. As you have heard we have gregor wolbring who. Is associate, professor in the Department, of Community Health Sciences. And a, leading scholar of, disability. Studies at. The University, of Calgary in, addition, he is a biochemist. And again. He is joining. Us remotely. Although, I have utmost faith in the technology, I want to start with, Gregor's. Presentation. Will will have each of our panelists, talk for just a few minutes to. Set the stage and in terms of what their research. Scholarship. And and work brings, to this conversation so, if, you. Could tee up Gregor's presentation. That, would be great. Making. It worse. As. To the stakeholders, everyone, is a stakeholder I. Have. Certain assumptions, the. Lens of ability, expectation. And ableism, is a useful one. Talking. About your man gene editing is too narrow, the prevailing, medical safety focuses, to narrow the, prevailing, discos exhibits, and needs as a patient flavor of disabled, people and there, is a need for ability, expectation. Governance. As. To assumption, one the, concept of ableism was developed, by the disabled, people's rights movement, to question normative, body ability, expectations. And the, ability privileges. For. Example, ability to have paid work to gain education to, be part of society to. Have an accepted, identity, that, come with an ability normative, body and the, disabled, ISM the negative, treatment of the ones judged, as impaired, as ability wanted. Ability. Expectation. Would be nice to have certain abilities and ableism certain. Abilities, are seen as absolutely, essential our cultural, dynamics, used, to define oneself, and others on, the individual, all the way to the nation level and it's, an influential factor, in the engagement, and disengagement between. People, and nations the. Ability expectations. And ableism impact, and shape human human, human animal, and human nature relationship. Ability. Expectation, in ableism, can be used to disable, or enable, cognitive. Abilities, are for examle used to justify racism. See, the book bell curve sustainable. Development, was the world as a concept, to, have a better ability. Expectations. Human in relation, to nature. Talking. About your man gene editing is too narrow because. It assumes other areas such as somatic, gene editing or, even, pre, selection, on the photos and embryo lever are not problematic, which, is not the case. The. Prevailing, medical safety debate, is too narrow, because a medical safety debate, has specific, boundaries focus. And measures of success, or failure, which, do not capture many of the problems. You. Can see here just the table which shows clearly, that safety. Is mentioned. Much more than for example justice. And equity. The. Prevailing Disco's inhibits, and needs a patient flavor of disabled, people this, table shows that we have i just'cause more on their medical patient.
Flavor My, patient, you see many more. Hits. And with disabled, people or people with disabilities. The. Term disabled, people and people with disabilities, are often used to depict the social group of disabled, people and, the social issues they face which, does not fit the medical safety focus, whereby, the term patient, is mostly used to focus on the medical aspect, including, medical. Safety of the disabled, patient I. Say. There's a need for ability, expectation. Governance, two courts eminent SSS Susan Sherman relax. The appropriate, intellectual, tools for promoting deep moral change in our society in. Many. Societal, settings, ethical. Reasoning might not be the deciding factor but. Sort ility of the intervention, to fulfill a highly valued ability, expectation. This, might be one cause of the, lack of influence of assess is perceived, by sherwin, achieving. Political and social change, happens. Among others through ability, expectation, changes, as. To the governance discussions. They assume many abilities of the public, including disabled, people the public does not have here's, a picture you can get this from my, students. Lucy tea master scissors its online open access there. Are many barriers for disabled, people to, take part in discussions. Let. Me finish by thanking maritza, to do such great work and, the organizers, for allowing me to contribute, to this conference, by. Virtue, of thank, you. Gregor, if you can hear me I wanted to ask you just one question before, our. Honor other panelists. Do their introductions. Which. Is if you could just tell us why you are. Joining us remotely rather, than here, at, Berkeley. Simply, travel is just too hot. Unpredictable. Who knows who is striking, where and which plane is going, and. Simply, aren't you getting older right. I mean having I mean overused the body due, to non accommodation. That, realities, in society, I. Mean I'm Imogen ethic since 1988. So. I have a lot of clay here as you can see and that comes with the same as a sports person you, hope I use your body you. Pay your price eventually and I pay the price know that I had to overuse the body constantly. Thank. You. Mohammed. Give. Us a little, sense of the kind of thinking. That you've been doing about this subject yes, thank you very much and thanks for having me here you. Want to start by a few introductory, remarks about. What. We mean when we say Islamic bioethics. Or Islamic bioethical perspectives, and. Having. Me here may give the with. My title as professor, of Islamic biomedical.
Ethics May. Give the wrong impression that this, is the norm, we, have also professors, and is like bioethics, like the professor's we have here in so many. Subspecialization. Even, in Islamic bioethics, which is not the case. If. I'm not mistaken this is one of the only positions, with this title, in the Muslim world and. Islamic. By ethical deliberations, in the Muslim in, when it comes to the Islamic tradition. Falls. Within religious, discourse so the people who. Involves. Involved. In these discussions, usually. And normally, should be religious. Scholars and Islamic, Studies specialists. Due. To some factors. Some. Of them related to. Education. System, and, some. Of them related to our age of modernity we. Don't have the time to get into that it. Becomes. Interdisciplinary. Discussions, so we will not have the religious scholars only, that, should, have. Normally. The case but, we will have with, them on the table other stakeholders. Especially. Biomedical. Scientists, and geneticists. And genomicists. When, we talk about the topic, that we discuss so, we have interdisciplinary. Discussions, not, represented. By when, specialists. Like, a bioethicists. But. We will have interdisciplinary. Discussions, represented. By different, specialists. By, the beginning, of the 1980s, we, have an institute. Institutionalization. Process, of these, interdisciplinary, discussions. Till. Now so, far we have three main institutions. Based. In the Muslim world these institutions. Are transnational. Institutions. And. Hosting. Groups. Of religious scholars biomedical, scientists, and sometimes, M, Lowe. Specialists. And law experts, discussing, wide range of topics including. Those. Related, to genetics, and genomics. One. Is based to are based in Saudi Arabia and, wen, is based in quite these are not Saudi or quietiy. Organizations. These are transnational, Islamic. Organizations, where every. Muslim country is represented by, at. Least one or two and sometimes, also, countries with the great, number. Of Muslims. Living, as a religious minorities. Like, those in India or, some. In Western. Countries, these. Institutions. Specifically. These three institutions, have. Been deliberating, on issues related, to genomics. In. Genetics. And since. 1993. Started. The discussions, so, we have a phase from 1993. Till 2013. And from. 2013. Is another phase between. 1993. And. 2013. The discussions, were, more or less focusing, on. The. At this time the new project, Human Genome Project which. Started, in the u.s. just a couple of years before in. The. 1990. And then they, started their debates. The. Key question at this time. That should, we Muslim, countries P, part of this genomic, revolution coming.
On Or not. This. Was the, key question, from. 2013. We. Come to different. Sets. Of questions. In. By. The end of 2013. December. 2013. Both. Saudi. Arabia, and Qatar. Started. Their National. Genome Project for, sequencing, people, in their countries national. Project. This. Was after coming. To important. Conclusions, mainstreaming. The perspectives, on Islamic. Ethics and genomics, saying, that joining, the genomic revolution is. Not, just. An ethical, act is not, just a good option but. It is actually a collective, Duty that. Muslims, have, to be part of the genomic revolution firms. Must be available for this type of research. Collaboration. With main institutions. Worldwide. Must. Be prioritized, at. The national level for Muslim countries, this. Position. Was. Adopted, by the three, institutions I speak about in November, 2013. December. 2013. We. See the launching of the projects, to. The public from. 2013. Until now we, started not any more there whether question, should. We be part of this revolution or, not but, we started to have specific questions have. Questioned how this should be done so. We will have questions. About, for. Instance ethical. Management of incidental. Findings we, will have questions about gene therapy we'll. Have questions about gene, editing and, the discussions, that we have today. This, is more or less than, historical. Overview of the. Discussions, and then later we can discuss more about that the, final point that I want to say is that. When. I say, personally. Islamic. Political perspectives. I'm speaking, about those, who participate, in these interdisciplinary. Collective. Discussions, and type of reasoning, and, these. Discussions are. Marked. By. Strong. Diversity, of opinions, and, the diversity of opinions, and sometimes even conflicting. Perspectives that, we, have here in the West is not. Something, exclusively, Western, but. It's because. Also. Of the type of questions, that we address these are new questions we. We didn't have them for, centuries before, like. The other questions, that we have and we still didn't resolve yet so, these. Are new questions you, try to link, your answer to a specific moral tradition, when, it comes to to Islam we think about moral, tradition, which has been there for, at least fourteen centuries so, it's very difficult to, link these new questions, to, a moral world which, quite, old. To. Give a question-and-answer. Relative. To the question to the modern question but rooted, in the tradition, this is usually the. Big, question that we have these, types, of answers and deliberations. Diverse. Also, because there is internal, diversity in the Islamic tradition we. Don't have when. Type. Of. Islam. And Islamic tradition, you have Shia. Scholars like. What we have in Iran and Iraq, and you have Sony the majority, and each, also. Tradition, has its own specificities. When. We come later we, may talk about these details and. Before I let you go for now Muhammad in a recent paper you, described. How. Muslim. Moral, scholars. Reach. The conclusion, believe that, that. One should take a precautionary. Or that Islamic. Teaching. Says, that we should take a precautionary. Approach I think to germline editing. But that it is not absolutely. Prohibited. But, recognizing. In Gannet there's a diversity of views on this is that sort. Of the kernel, of Islamic. Law they. Make a difference. Between research. That. You study that and you, apply it at. The level of research usually, it's, quite, open because. Search it's about seeking, knowledge, which. Is. Highly. Valued, virtue. In the, Islamic tradition that, you know yourself that you knew in the universe these, are the ways through, which you know God so, this is something that should remain open so, no. Problem when it comes to application, they. Would differentiate between. Editing. Adult. Cells and editing. Germline cells. Adult. Cells much more open germline. They, would be open if it is for. Medical. For. Medical. Treatment purposes if, it, is for, enhancement. Purposes they. Would be. Much. More. Cautious. About. About. That so, normally, speaking. Editing. Adult. Cells. Number. One the least controversial. For. Medical. Purposes then. Germline. Editing. For. Medical, purposes, then. Adult. Germline. Edit. Adult, sorry self editing for. Enhancement. Purposes then. The most controversial, and, germline. Editing for, enhancement, purposes with. All the difficulties, that we can have about the, borderline, between, medical. Treatment, and enhancement, etc. Thank. You ok, let us turn to you did your power point load or are you that's. Good me, anyway ok ok go, for it. Nice. To meet everyone just wanted to say. Thank you for having me here and having this discussion about things. That are emerging, technologies. But also I just want to be stressed, how. Ubiquitous. Something. Like genome, editing technology.
Is, It's not that it's new right. It's we've known about this since Paul Berg in 1980, he was awarded a Nobel. Prize for recombinant. Technology it's, that it's cheaper. More. Accessible. And. And. More reproducible than, ever right so I'm not a bioethicists, I'm just Hawaiian so. So. So that kind of for. Me it's, it's, sort of a different steak that's going on here and I'll kind of explain what I mean so. I it. Rather than focusing on this whole idea of of. This brave new world of health disparities that's. Manifesting. As a result of the application of these technologies, right. Which. Which is very real and we're gonna have conversations, about that throughout the next two days but, I'd like to think about using, this tool to actually rewrite history and so, what do I mean by that there's one, of my favorite scholars, is Martin. Luther King jr. and he has this amazing quote. And it's not it's we're, not, makers. Of history were made by it and so, I take, that to mean it's like we've. Sequenced, and begun to sequence, this kind of comprehensive. Full. Spectrum, of human genetic variation that exists, however. 90. Something percent of, this has really exclusively. Featured individuals, of European ancestry. So, we're not really, understanding. Everyone's. Human genetic, variation we're, understanding, one. Populations. And so, what that does is if you compliment that statistic. With, the statistic, that 95 percent of clinical trials also exclusively. Feature individuals. Of your main European ancestry, you see the writing on the wall for the, future. Predictive. Preventative, and personalized, medicine because we're not allowing. Everyone, to participate so. There's this inclusivity. And exclusivity that's, going on this. Is highly problematic because, we're. Not, learning about human. Genetic, variation in, context. Of the environment so when. We talk about indigenous. Communities, that have been living. And sequestered. In certain, populations for over 50,000. Years per say you, know we're no different than darwin's finches right, like we are a reflection, of our ecosystem. Where are we we, are our. Genetic. Variation, that you observe everything from curly hair to straight hair skin, color people's.
Eye All of these things are a reflection of the way we interface with the environment you, talked about sickle, cell anemia, what. Does anybody know why that young man in front why, does. That exist. Do you know. Does. Anybody. Malaria. Exactly, it's population genetics 101 it's a reflection of and actually, it's a reflection of modernity it's a reflection of like agriculture. Which gets, to standing. Water which gets to mosquitoes and now you get right okay so so. Those are that's that's a story that we create using, evolution, using, human. Genetic variation that's. Real it makes sense it checks out it's, not a just so story which, is something that. Stephen. Jay Gould and and Lou inton would, would say about these like adaption, estar Gyu man surround, a genetic mutation so. Because we've only sequenced. Only. A fraction of kind, of indigenous, people's genomes. People, can make these just, so or false narratives, the, evolutionary, narratives, that are in a lot of cases racist, and not. Really ground, in truth and I don't I don't think it's far-fetched, to, say that they're racist and there's intuitional, institutionalized, racism, that goes on around access. To this technology the, democratization, of it and self-governance of it so. What. We can do with CRISPR and what I'm doing is we're revisiting, these narratives, so, you say you, sequenced mu you found a mutation in Polynesia, that. Is thrifty and that, predisposes. To obesity but protects, against type 2 diabetes, and, you create a whole narrative. Around, voyaging. And, how my. Ancestors, didn't, have enough access to provisions, on the boats and that's, why we have really high rates of type 2 diabetes and. Obesity. But. The reality, is that's a consequence, of separating, people from fishing, rights hunting.
Rights Replacing. Our subsistence agriculture, with spam. White rice and soy. Sauce right, like this is the narrative that's going on all over the world so, we can actually take a tool like CRISPR, and reverse. Engineer. Mutations, into stem cells differentiate. Them, and refine. What's, going on mechanism, you say net police people have a mutation that, is for, hypoxia, and high-altitude elevation. Prove, it now. We can do this in real ways like never before and it's cheap and it's reproducible, and it's a beautiful way to think about science. And the way we repatriate. Individual, communities, histories you can also do this with Neanderthal. Mutations, you could take in the undertow mutation we're doing this forthcoming, research, and science please cite it, you. Can move that into a stem cell and you can ask questions about introgression, what. Came from a Neanderthal, and what did not what, only existed. In Neanderthals. And might have led to their demise and you, can look at these things in cellular, models and make data this, is like one of the coolest features of genome editing right it's, very positive and it. Allows us to, rewrite. History. Now. There's. A dark side to this as well right because. As much. As we want to repatriate our history we also have to worry about the. Fact that people want to create intellectual, property, around these individual, mutations and there. Was a famous court case maryclaire, King versus. Myriad genetics, that. Kind, of led to this. Kind of gray area around creating, actual patent claims around mutations, but, that doesn't mean that you can't be more subtle about, identifying. Domains, in an, indigenous population that, might lead to the development of a blockbuster drug and then, what now, you're talking about treating, indigenous, peoples genomes, just, like cobalt, gold oil. Timber. Etc. And, that's. A dangerous idea because. If we don't put indigenous, people in the driver seats or vulnerable. Populations, so, that they can really, think about the. Potential applications, of this type of technology, self-governance. And how, to create, intellectual property that has, a circular, economy that goes back into their community, that, is continued, colonialism. In 2020. And. There. Are so many different, patents, that are coming out I encourage, you to look these, things up there's, one that was, recently released from Brown University an, individual. Named Steve mcGarvie we're watching you that. And there were no Polynesian. People on this patent claim not. One name and, it. Surrounds a mutation that might lead to drugs. That are relevant for metabolic disease so I just wanted to bring up a number of different ways that we can use this and and think about CRISPR. So. In my, never-ending. Quest. For, optimism, and sir good news is, there any example. In history of where a. Biological. Resource, that, was that, that comes from an. Underserved, community, a community, that is not highly represented, in science. You. Know I'm going back to the, the periwinkle. From, which a leukemia drug was derived, you. Know there's been. Lots. Of controversy about, for instance you, know strains of. Viruses. And can you make a vaccine against, that and who profits. Anyway the question is has there is there, one example, that you can point to that I'm, looking at your expression that, gives us hope that the, kind of exploitation, that you just outlined for us. Will. Not happen or that there's an avenue to, make it not happen right right. That's a great question. First. Of all I would say probably, not right, so far in so, far I mean we could probably debate. Kind of smaller examples, here or there I think what, you have to do is create an infrastructure, for self-governance, right so, you you. Create. You. Create, plate. Biorepositories. Like in Eagle. Butte and. The Lakota Reservation the first indigenous. Biorepository. Where, indigenous, communities, can. Consorting. With.
Access. To server server farms and accurate and algorithm. Development you think about the way in which we've we've, we biased, so many different algorithms, that we create like there's. A great book algorithms, of oppression like go and your Google search bar put in black women and see what comes up you know you know what I mean you already know and. So we're come we're kind, of combating, all of those components because there's so many different pieces to, this pipeline that are complex, but. Really I mean in thinking about intellectual. Property, and, creating. Royalties. Around this you you have to train, people in ways where. That they can serve their community, and really. Build that capacity for, self-governance, and we're doing that in a lot of ways and I'd be happy to talk about that later Thank, You Billy. So you're. Closest. To where, I think, tell me if I'm wrong this, is got this being germline, editing is going, to happen or not and the reason I say that is. Take. Mitochondrial. Therapy, which is, illegal, in this country a, family. Went. To a fertility, clinic in New York they, said please fix. Our embryos. The. Physician. Said sure and they. All went to Mexico, and we. Then, had the first birth of a and, from. The United States this is legal in the UK they, so called three, parent-child, so, where there is it seems a. Patient. Demand and. Existing. Science, there, will be away but, my, question to you is if you could just give us a sense from, your. Conversations. With parents with prospective, parents, just, what kind of things you're hearing about. Attitudes. Toward germline editing. So. I. Hope. I can sound as profound, as these two next to me but. My work is in the clinic and oftentimes my work is with people who are pregnant currently. Pregnant who, are, facing. A diagnosis, in their pregnancy that was unanticipated that. Is a wanted, pregnancy, that. We're. Working with them to try to clarify why this happened. And try to clarify, what. To expect, from that child, and, a lot, of the work that I'm actively, doing I'm working on two, three. Research studies where we're trying to either. Identify. Genetic causes to congenital anomalies, that have been identified in, an active, pregnancy, or. Working. On. In. Utero therapy. For alpha-thalassemia, also. Hereditary, anemia like sickle cell anemia working. Really closely with, those, relations hopefully. In a thoughtful and ethical, way we work with Hawaiian. Patients, I'm going there in just a few weeks lucky me. Because, we're trying to help. Understand. The, needs. Of these patients we've had focus, groups for, beta, thalassemia looking.
At Gene editing and in utero stem cell transplantation, so. When you talk about germline. Editing you're talking about something that you can anticipate and, fix, and the. Real the. Reality. Is that most patients have a diagnosis. That was unanticipated and. So. I am, not hearing, much about Jeremiah, and editing because I'm I'm working, with families that are facing a problem. In their current very wanted pregnancy. However. Interestingly. Enough. We. Are developing. These in utero therapies, and a lot of the work that we're doing is, to look, at the. Cells, of the fetus to try to find out what why what is happening, is happening there's, a problem called hydrops where fetuses. Will develop, collections, of fluid in different compartments of their body around their heart and their lungs in the abdomen, or under the skin and we. Know that a certain, component. Of those diagnoses can be viral. Or, environmental. Or due. To a congenital anomaly like a cardiac defect, but also a subset, of these conditions, are due to inborn. Errors, of metabolism and. Genetic. Diagnosis, that many, groups. Are working very actively at, developing, therapies that are introduced, after a baby's born and after that diagnosis, occurs prenatally, so postnatally. So we're working really hard to move, that diagnosis. Prenatally, to hopefully. Understand. What conditions, cause this complication. And about a third is thought to be metabolic. These types of conditions that your body's, just not making what it needs to break down certain proteins, that, introducing. That thing that your body's not making could then, ameliorate, that complication. When, those, therapies. Are introduced, after a baby's, born you have some damage that's already been, done and it's irreversible so, potentially. If we can introduce those therapies, before a baby's done. Before. The baby's born some of those, injuries. And insults that happen during that development, can be corrected, and we. Recently worked, with a patient, who had a baby born, with one of these conditions, and then was pregnant again and. Her. Family, reached out to the pharmaceutical, company that made, the enzyme, that was, offered to their child that is now deceased, and said what, can be done we have another pregnancy and, this pregnancy is also affected, and we, worked hard to try to make a therapy, available to them in. The pregnancy we got FDA approval and then the pregnancy, had complications that precluded. Us from being able to try. This approach. And, the. Mom just, this past week actually went in for an ultrasound and there was a fetal demise the, the baby didn't survive. And we. Were talking to her and I, I. Was. Texting. With her and sending, my condolences, and how can I support you and she, said have, you heard of CRISPR, and. It's. So timely, and my homework assignment, from her was to watch another, program, which I don't know if I should be citing or not but it's not this human nature which I'll look at when it's publicly available but, a natural, selection, and I started, watching it on the lift right here thinking shoot should I be cramming for this and. It. Was interesting though because this is a patient, from an underrepresented, population. She's absolutely african-american. And she's on all these different support. Groups and hashtag, this, condition, and she's like Billie I'm looking. Around and, why is nobody black, that, has this diagnosis. You. Know there's an in it's and it is very much an access, to care and. Accessing. Care both sides and. We know that history, with, genetics, is, brought. With a lot of. Wrongdoings. And then also good intentions, that can go wrong and so there's. A community, of, distrust. In those communities, and I was talking to her and you know everything's. A rare disease and I. Don't. Know I. Know. A lot about genetics, but you can't know about every syndrome, so her asking, me this is it just not common and black population, or is it, Y and, I'm like I haven't. Looked at the ethnic background, to my knowledge it's a pan-ethnic, condition, but, there are these issues of access to care and accessing. Care that, may be why you and. People, like you are underrepresented, in, these support groups maybe, the diagnosis. Had never been me maybe these babies, were born never. Understood. Why because, they didn't have access to sophisticated testing. To clarify that diagnosis. But. I will look into it for you and I will watch on natural selection, so.
That We can have a conversation about, that that may be meaningful, to you and edifying. For me as well so, that's actually the first time a patient asked me about CRISPR which, happens, to be like, right before I'm here and trying, to sound smart. And be the voice of these patients and also the voice of the, clinic Kelly, Ormond is here and we were chatting before cuz she'll be talking, later and we, recognized, from the speaker. List that maybe were just. The only ones here that actually work with patients and, so hopefully, I will be able to do that well but I think one, thing we have to recognize when we talk about germline, and editing, is many. Patients, are confronted, with the diagnosis, that it's just too late for germline editing and, so it's it's sophisticated, and sexy and awesome, but, we also have to recognize that the reality, is things. Like sickle, cell and somatic, gene, editing where a beta cell and Bluebird now has the FDA approval, these are the real issues that patients are thinking about on a day to day and is this, emerging, therapy, going to be meaningful, for us or is this another kind, of flash. In the pan really, exciting, and then three, or five years down the road we find our, friends that had, accepted. The therapy decided to move forward having, downstream, consequences of. That is it a bigger risk than a benefit, and also, this. Diagnosis, has defined us in those same ways because. Facing. The, challenges, of a diagnosis, can also be. Very edifying and, meaningful, and make. You who you are and so that's what I've heard from patients. Only once about CRISPR, so. I'm going to put Billy and, Gregor on the spot in one second but I just wanted to mention. In a few minutes I'll open this. Up to, questions from, the audience but, those of you who are here in body and those of you who are here only through, electrons, so, be thinking what you might want to ask our panelists, so, I'm. Sensing. One point. Of interesting. Connection. Or perhaps disconnection. Between Billy. And Gregor and it has to do with so, as you said Billy in in many cases. The. The. The, pregnancy the pregnancy is underway. Whether. It was through the, old-fashioned way of getting pregnant or even IVF, so. We're. Past being able to CRISPR, the, germline but, I'm, guessing we are not past the. Possibility, of termination, so. I just want to put that out there for a second and, ask. So. It's possible to choose, not to bring into the world a child, that will have a a. Significant. Medical. Complication. So. My question, is what, whether. So. That's called there's. This new thing called liberal, eugenics. Right or the new eugenics which, is the idea not that the, powers that be appear will say who, may, and may not who shall and shall not reproduce, and how etc, but rather the. The parents. And would-be parents themselves are, choosing, as, much as they can what kind of children to, have and not have so here we have what we might call reproductive.
Rights Reproductive freedom, on the, other side, are. We going to get to a point in society where, parents, who have chosen to bring, chosen. To bring into the world a child, who has severe, problems, will, be regarded. By society as, having, made a. Terrible. Decision in some sense and, if that happens well the people who have these medical. Problems. Be regarded, as somehow. Mistakes. That should never have been brought into the world so I'm. Just wondering if, again. That's any kind of a I'm, going back to the woman I spoke to who said fine talk about your common. Heritage of humanity human, gene pool all you want I just want it's best for my little my child, so my question Billy is whether that is any kind of an idea a thought a conversation. That, at, all enters, into the, interactions, that you have with patients with. Your families or that they bring up themselves a. Concern. For making, a decision because. They're worried that if they continue, a pregnancy they'll, be thought. Of as wrong yes, I, think. Most, often the conversations. I have with patients, are a concern, for, making a decision that they, will be challenged, about first stopping, a pregnancy, I, think, oftentimes patients. Don't know and. I think oftentimes in the, greater, community, so I'm. On. Facebook, or not so much anymore but I once was and, I, very. Much support, reproductive, rights and, there, was like a fundraiser for Planned, Parenthood and one. Of my friend's, moms was, like how dare you support. Planned Parenthood, you know and then. You have to worry, about or think about how to navigate that commentary. And think. About how, to. Understand. Where she's coming from but, also recognize. The lack of understanding that, she has about these face choices, patients. Are faced with. And. So. We. Work, in a kind of niche world I work at the University, of California, San Francisco fetal. Treatment center so you'll also want to recognize, that many of the patients that I see are patients, choosing, to, proceed, with the pregnancy, and access, care to try to, make.
Available, The best opportunities. For their fetuses, and children. But. I honestly have, not I. Guess. What. We try to do and perhaps, we're successful at it is allow. For patients. To recognize, that whatever choice they make and that. They're it's their choice and to have an opportunity to choose. Therapies. For their child even recognizing. That their child will have challenges, in the world, health. Problems, you know thinking. Of not, just intellectual. Disability, or developments, with delious but we're we have people that are referred, to us because their fetus has such. A complex, cardiac, defect, that they will be offered you know a three stage cardiac, repair there's a 50%, chance of survival, and maybe by ten they'll be offered a heart transplant, so all of these things that we think about as far as congenital, anomalies, aren't necessarily, genetic, although they may be caused by a genetic finding. But, these are complex. Life. Choices. To. Recognize, the quality of life and accept what is an a