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>> For coming we're getting going a little bit late because of mechanical delay of our second speaker but she is very close by the way and I. Just want to take a moment to welcome you all. Together with Dr mommy and Dr Lewis we. Want to people has a T. I am working group on race and racism in contemporary biomedicine and this is our spring we have one person as well as do ongoing work throughout the year fostering interdisciplinary conversation across natural sciences humanities social sciences trying to piece together about how race and racism operate in contemporary by a lot of time this year we are very excited to post on earth where the last of those things.

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Directly from. It's been a great fear I see from your place on. The. Front right on this thing around recently around two years ago. Words. From somewhere else but. If you listen to. Many other members our main goal is a collective to. Read their ideas of life from.

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The different. Great. New things and. We also help to support organizations and so forth to. Support life and I. Think you raise a question. As long. Yes And absolutely you can get more involved in all the. Things that I'd like to point out is that we do have participating faculty and graduate students not only from across the social sciences and humanities and natural sciences but also from destitution and so sometimes we have this great opportunity here in Atlanta to have a chance to connect around issues of fire medicine and social justice but we don't always get a chance to do so and so it's really great to see so many folks here from Emory as well as from.

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Other institutions how many people are here from time to. Time to strike how many people are from Emory. More than. Any other institution. So wait just a moment and. Get here before doing so and then we will get started very very thank you for your patience. Basically. I was going to be the moderator of our conversation and that's.

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Speakers. Speak for just about ten minutes. Articulating their perspective on race after that you know or whenever there's a. New word. From. Type of the story of an angry. Moderate kind of conversation and your comments are very very wrong. Well. Please. After the show. You. Different. Your son.

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Or other undergraduate at the. Risk. Of. Getting a late start. And. The research for this. EDITION. Of. The party in the fight against medical discrimination and recently. Reconciliation. Take a look at her book. America. Versus. Her many articles. People. Write. And have a second for me. Because of their public life.

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Have heard today I'm. Thankful. For the people you saw I said OK I don't know. If that was a good moderator or you don't you know but I'm not. Trying to be centered OK explain you just know that you learned a lot. Of so just as we get started so I love the president mention of biomedical engineering want to thank you all for being here and since we've been up as I've been a part is working with people from social sciences and the humanities been interesting for me as an engineer to be stretched mentally on how well we do in the natural sciences and engineering actually have implications in the social sciences in the way that they look at problems we can all work together to actually come up with really innovative solutions so I can stretch quite a bit looking to being stretch more this afternoon but we'll start with this kind of ten minute from a larger nothing keep me honest hold me to it well OK so I'm so glad to be here I mean you know Dr Benjamin and I left weather conditions of the northeast this morning so to come here and break out my sunglasses when I got to the airport you know they're off my scarf it was this fabulous and I'm glad to be here because you know as Dr Pollack suggested she and I have been a conversation for over a decade and it's one of my most special and beautiful intellectual relationships and I.

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And admire her so much and you know no work I've ever written or dwelled upon since the time I met her would have been possible without the conversations that we are one of the smartest people I know so thank you and the working group on race and racism in contemporary medicine for having us the amazing black Timmis think tieing for having us and greetings to my sister scholars to Dr Randolph and Dr Morrison Dr Singh and folks I'm missing in the audience and of course Dr put this Great to meet you so OK ten minutes so I guess you know when you get a little old he and your career and you can actually sort of think about the work you've been doing for what seems like five years but it turns out to be twenty years as a things like what you can actually you know the sort of one of the benefits of age is having the ability to the time to reflect on what you've been doing because you've often just been doing it often if you're on the tenure track you're not even thinking about it you're just trying to cope with high quality and get out there greetings to Dr Sewell who I miss there and so so I think recently I've been thinking and this actually Ann and I talked about the structure park and I talked about this I think her work share some of this I think what holds my work together from the after Futurism project I started in one thousand nine hundred eight as a graduate student of the work I'm doing now is trying to wrap my head around and think about how the how African-American communities in particular the communities that have been the most subjugated by denigrated by abused by victimized by medical research scientific experimentation forms of thinking about classification that come out of scientific tradition how does this community in particular find a way to be in a world in a techno scientific world how do we find a way to be doctors to be scientists I mean who would want to given the legacy of scientific racism who would want to be able action and assist I mean how do you even lay claim to bad right.

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But we must be black geneticist and we must be black subjects of clinical research and we must be black socially ologists of so of science and we much be we must be bent scientists and all of these things and so I've been interested in the various strategies that communities of color have used to try to make that leap which is a profound one it's a spiritual leap it's a psychic leap it's specific to my logical leap.

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I've also been I think interested in you know as I said to some of the graduate students I met earlier I began work and graduate school in the mid one nine hundred ninety S. And there were lots of historical and social science monographs about scientific experimentation and their work doctors on Iraq or proper working writing about Nazi scientists Susan revery was just starting to publish her work on the Tuskegee syphilis study that would become a monograph several years later so there was a constellation of work that was really important that allowed us to think about race and health as a kind of object of inquiry in ways we hadn't been able to think about it before but I was struck as someone who's also been always deeply interested in social movements that that couldn't be the whole story so my dear friend Harriet Washington wrote a tremendous book about a decade ago called Medical Apartheid which some of you are probably familiar with the subtitle of that book is I think something like Medical Experimentation on Black Americans.

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From Colonial Times to the present so it's a book about more than four hundred pages and Harriet is you know writing about three hundred years of history and not once in those three hundred years or those four hundred pages do you get a sense of black community saying you can't do that to us or we have other scientific experts that actually say your analysis about cranium a tree is wrong talk to Dr to voice he says that's wrong so nowhere in that book was any sort of sense that the communities our communities that had been so deeply damaged often by science and medicine had anything to say about it but the whole history.

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The black freedom trope the struggle tells gives the lie to that we know that couldn't be true. And so my projects have been in part trying to begin to create that archive and tell that story so my first significant problem Africa future is I'm actually as part of this right how do we even begin to think about African-Americans who for all sorts of reasons reasons of exclusion have actually not had access to being a top are one geneticists right up until you know forty years ago fifty years ago medical schools professional societies were segregated African-American men and women who wanted to join them could not write Jim Crow was not only about lunch counters it was about the very way that we constituted scientific and medical knowledge in the United States and elsewhere it's deeply ingrained in the structure of it.

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So how do you get around that so after Futurism looks to other ways I mean part of the after Futurism story is that people are like well you know you're not going to let me in the medical school I'm going to think about create that method like Sun Ra I'm going to create my own cosmology my own sort of deep rich cosmology about where I come from how this world comes to be and what the world means right you know Brooke born Herman Poole born in the Jim Crow south and you must understand the after Futurism of someone like sunrise coming out of an experience of of apartheid in the south right and so that's one way that but communities got around it.

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And my work on the Black Panther Party I became interested in thinking about well first of all I became interested in the fact that they did health research or health activism at all and so I was just trying to tell that story more generally but the story was in part about them providing clinics about them providing sickle cell anemia research and screening and testing the first ever I think far as I could tell grassroots genetic screening and counseling program in the United States and so deeply engaged in how communities black communities were under search.

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News you would expect but also in gauged in the ways in which African-American communities were over exposed to the worst vagaries of medical research so I'm not only writing about the Panthers creating a national network of clinics in which they're providing basic Triology often but also references to trusted doctors at hospitals at bigger hospitals and institutions that had really often been vetted by members of the Black Panther Party in part by having to go through political education classes.

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But also about the ways that they try to protect communities from medical research so in U.C.L.A. one nine hundred seventy two there was a proposal to house with their nearest psychiatric institute which still exists today at U.C.L.A. which you might know a center for the study and reduction of violence that was proposing to do in this moment where psychology was making a turn in part from Freud to cutting edge science right and part of what that meant was that we might be doing brain surgery so in the early one nine hundred seventy S. there was endeavors to think about psychosurgery and to think about psychosurgery as an intervention in particular for disease brains that might make the carriers of those brains and minds predisposed to violence.

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This proposal for this new C.L.S. U.C.L.A. Center is mentioned by Ronald Reagan then governor of California in his state of a state address as something that was going to the state was going to do to address violence and it was targeted almost exclusively on black and brown men and boys in the Los Angeles County area Los Angeles County school districts people who were incarcerated there and then there was one project of course that was also on target women which was going to look at when women were more violent in their menstrual cycle how that was going to be theirs and I don't know what it's going to measure hormone levels so the Black Panther Party working in coalition with the National Organization for Women Cesar Chavez as Farm Workers Association and other organizations the western region of peace so this is civil rights and black power working together right now these sort of divergences.

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Has worked together a coalition and protest at the California state legislature using a lawyer so this is not a march this is not a demonstration and they stopped funding to the center of the center never gets established at U.C.L.A. so this is not a story that's going to appear in Harriet Washington's Medical Apartheid because it's a says story you know how do we write about and when do we write about the moments in which African-American communities were actually able to stop the kind of research that Harriet Washington Washington writes about that Rebecca Skloot writes about.

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So briefly about the so so that's that project in the social life of D.N.A.. I was still interested in that bigger question that I began with but a sort of subset of that question which was is the desire for out of among African-Americans among some African-Americans to uncover roots about our ancestry that has been lost to us many of us because of the history of chattel slavery is that desire so strong are strong enough that African-Americans will put a tissue sample and effects on the local and send it to a laboratory in Salt Lake City Utah and have that data sent back to business in D.C. or are Los Angeles and have that data expect that that data will tell them something about themselves like how do we even given the history of scientific racism you can go back to eight hundred fifty in Europe you can go back to one nine hundred fifty in the U.S. you could go to you know you could go across the street.

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How do you how do we how do we end up with a bid by twenty seventeen a billion dollar industry and which significantly African-Americans are participating and so that's the story that I'm trying to tell here and it's a complicated story it's not a story of African-Americans being subjugated by institutions of social control who are extracting their genetic information it's a story about African-Americans opting into as consumers.

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A kind of genetic way of thinking about identity and ancestry and that's when things get a lot more. OK that and that's part of what I tried to discuss in the book and one of the more complicated stories is indeed not only African-Americans challenging the sort of spurious or misappropriate uses of science or medicine in their communities but moreover endeavoring to use them in their politics for political liberation including a class action suit for slavery reparations that I write about and I'd be happy to see more about well all right so you are the gloves.

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Off to be devoted to the latest but please not to believe in the piece is your thank you so much I do apologize although it's not my fault for being not at all I will blame Delta C.P. time not mine because I'm a Virgo I like to get everywhere.

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So I apologize thank you so much to the black feminist think tank I mean think about how we can start a party to like a sister close in the New York Philly area such a fantastic concept and idea of bringing all of us together and all of the sisters scholars and everyone I won't name them but cosign everything that friends or Nelson said I had intended to spend about five minutes of my ten minutes sort of embarrassing Alondra with all of the ways in which her scholarship is influenced my I'm going to take that down to two now but just to say that you know before I even started grad school her work was influencing me and the short version of it is is that it's not just what she sort of the knowledge that she produces what she knows but how she knows in terms of the generosity of spirit the kind of way that she moves through academia I tell her that she is warming it up for the rest of us and so I just want to acknowledge that with the way in which her example has influenced me and I'm sure many other people in this room my own work started right here in Atlanta I was a undergrad at Spelman working on a senior thesis.

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Shout. And experiment folks OK so that's a scene your honesty says I was researching a cop doing a comparative ethnography of of septics and black midwifery similar to the idea of doing medicine differently doing healing differently I was interested in that sort of knowledge is that we have been producing and so I wanted to study up black middle or free and put it in conversation with kind of conventional Obstat tricks in the process one of the students that I interviewed at Spelman who'd had a child either before she started or took time off and came back in the in the course of the interview shared with me something that then stuck with me as I sort of progressed and that was Ashley was having the Syrian section of her child her she overheard her doctor over her ask her mother while we have are open should we just go ahead and tie her up and so this was in the ninety's mid ninety's and so I realized that you know we think of scientific racism medical racism as arrows like we did that already we're we've done we're doing something else but this was my contemporary tool then recall that history of Fannie Lou Hamer in Mississippi appendectomies just brought it all back and I realize that you know the past is never passed that sort of idea and so I sort of brought the questions about power and knowledge and who has voice to kind of assert their their agency through science and medicine to then my scholarship around the stem cell initiative in California and I guess rather than sort of recall that to some of you have already engaged a little bit with the book and we can talk about that particular project in the Q. and A I'll just maybe mention a few kind of bullet points very sure of the kinds of ways in which I thinking about what's pertinent around race and genes now so things that sort of you know ideas that I think other people should be working on.

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As well as sort of interest in my. How this this sort of terrain is developing so. One of the things that I'm really interested in following the people science project is again this idea of how do we how do we engage a people science that is not just a cosmetic veneer of business as usual which is kind of what I'm documenting in the book the way that populism or popular science is used for various And but how might that we actually bring that about.

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And this is often what the work of a larger is tracing is how people have struggled to actually do that and so one of the ways I've been thinking about it is to kind of move outside of the US and look at the way that different communities especially Indigenous communities are engaging with scientists and kind of asserting certain kinds of interests and desires for what they want to know mix for example to do and so thinking about that as a kind of Saval turned science what what is the appeal of it why is genetics such a powerful tool for social movements for political claims so thinking about that you know on the one hand again this global context also keeping an eye out for the kind of more traditional policies that we would think of as these top down assertions of state power and the way they use genetics two examples come to mind in two thousand and nine the U.K. they experimented with a project called the U.K. Providence pilot project in which they started to test the phylum seekers using genetic ancestry and isotope analysis to try to arbitrate true from false asylum claims and they wanted to tell Somalis and Kenyans apart so they were kind of trying to see if people's near it is what they've said was happening corroborated what their bodies said it was happening and so this happened I think about one hundred cases were vetted until academics scientists said you know along with a refugee advocate said this is a misuse of the science right so this is a kind of what we might think of the Emperor's old genes and I'm also thinking about for this new project.

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With the Emperor's new jeans look like what would a bottom up version of this be for Indigenous communities to say this is how we want to use gentlemen to assert our identity and the other more recent kind of top down version of this is from Kuwait this year they've implemented a nationwide database in which not only Kuwaiti citizens but also anyone who visits the country is required to submit cheek swabs or blood samples to go into this database Now was this wall that was passed to allow for this database came soon after a tap at a mosque and so the justification was this would allow them to sort of be able to address widespread you know if there was another massacre or widespread kind of.

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Crime so it was like a safe security and safety issue that's the way it was frame but again you have Kuwaiti lawyers objecting you have geneticists from all over the world writing to the Queta government and saying you know by doing this you actually continue to turn people off from genetics about you you you feel the suspicion of the field by by having these more course of.

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Course of ways in which the field is being used and so thinking about race and genetics not just as a U.S. phenomenon but also thinking about the way that race casts nationality become Janetta sized both top down kind of versions and bottom up so these are things that I think we should be thinking about and researching another area sort of the third bullet point would be thinking about race and genetics and other axes of domination so thinking about in conjunction with gender and sexuality with class and disability and so for the last two you know I've been sort of tracing the way in which these new techniques for Gene editing right crisper and other techniques actually trouble our ideas about what genetics does in terms of fixing identity or fixing us in place now we have tools that actually say no.

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The point is not to keep you fixed but it's to transform you and and reengineer you and so thinking about how this raises again questions that have always been with us in terms of race but again the idea of what lives are worth living right so what do we want to edit out of humanity for Putri generations who gets to say what are valuable traits which ones are our bad traits and so the way that a disability justice lens would allow us to to trouble the Often the the boundary that's presented to us as these ways of using gene editing are bad because they aren't have some of these ways of using gene editing are good because they're therapeutic often that by an area between therapeutic uses and enhancement uses is presented like it's so clear cut and that we all agree where the line would go right so again it raises for us maybe we should allow that to be part of a wider debate and deliberation rather than just assume we all know what things we would want to edit out and what which ones we want so this is again thinking about race in conjunction with a disability approach to new techniques around genetics then if we thought something even more recently thinking about class and race I don't know how many of you are aware of a recent G.O.P. bill just in the last few weeks H.R. thirteen thirteen it's something like the workplace wellness employee wellness act right it's the idea that if you're getting you know insurance through your employer part this law if it was passed would say that if that wellness program through your employer require genetic screening it's not that you would be required to undergo genetic screening but that you would get thousands of dollars off your insurance if you comply right so it's not so it's coercive in a different way but it's interesting to think like who can afford to opt out who can afford to say well I'll just skip.

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You're saving thousands of dollars by undergoing it so again this takes us and forces us to think about the class dimensions of of genetics and the way that it it's sort of infiltrating as a strong word but the tentacles of a kind of genetic regime of Health are permeating you know our many workplaces and this is after in two thousand and eight we passed the Genetic Nondiscrimination Act So I think we should keep our eye on this but again the American Society of human geneticists have come out in opposition of the bill and others so it's not a given but the fact that it was was sort of pushed in there you know while we were paying attention to other things it is worth thinking about so race and other axis of domination I think is the area that we should all be thinking about and researching two other very quickly how mentally Good luck to him and OK one minute I'm working one minute I think we should also bring back the conversation about.

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How cultural racism intersects with medicine and science because so much of what we talk about is in terms of biological determinism right but often so much of what's happening that's juicy in the biomedical sphere is filtered through ideas of cultural traits that we are inherently as different groups prone to be like this or behave like this or think like this for example of one of the most salient sort of cultural traits is this idea of black distrust right by virtue of you know being born black you are naturally distrusting of biomedicine you know this is what your work troubles is this idea like that naturalization of that position these are viewed by medicine and science I think we have to trouble but there are many other traits about certain groups being like this and so that help disparities become attributed to their behaviors and their dispositions and so on so I think we need to bring back there are many actually styles in this room who are doing this but I'm just saying let's include.

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In the conversation about what is. What we should be worried about in terms of scientific racism let's think back about culture cultural treats last minute least thirty seconds I think we should also talk about whiteness and race and scientific racism I think for a long time again our common sense is that whiteness confers a kind of protective function in terms of health and medicine but we have so many examples about how racism gets under the skin of white people too and I think the case that I've been thinking about a lot lately is around the heroin epidemic and the whiteness of this heritage paranoia epidemic that you know.

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You know I just think that we have to trouble this idea that white people are helped by the current state of affairs right because in many ways whiteness not only through access to insurance but again the cultural goodness a White people actually allows them certain affordance is right there they tend to be over served in certain arenas that can actually be deadly right and so just a quick anecdote I was sitting at this the institute where I'm working this year and just overheard two staff people having their morning coffee talking very casually about one his cousin drop dead of the you know heroin overdose the other one the niece's prostitute you know as a sex worker in order to get access to White up or you know you know older white men talking about this very casually and so I think the normalization of this and the and the way that our regulatory regime is treating it so differently that drug drug could the epidemics that have affected brown or black people so again just saying that we need to bring white people back.

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To the conversation partly because I think that that bill certain kinds of sensibilities about that how do we work to address a system that's not serving anyone. Thank you but. Thank you thank you for a few minutes I did a whole lot of homework and I actually ran through a lot of like issues in the intro which is why there are professionals I will let If you want to respond to have before I jump and then what is there to say OK you know the Mike has been dropped a bit on the floor already you know that you're not going well I mean I can only I can only agree I don't really agree I would but one thing I would remind you is that choice first book was.

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Detection gets out about this is our share teacher trying to Esther about the. About opiate addiction crossing the color line and as they keep wailing frame others have used it from white to black and now you have another so you know choice were present as we just haven't written I just been writing about them for this week nominated for him for this American Sociological Association Award but you know we've got a book called back to a to Gen X. that was published in one thousand nine hundred that was republished in the second edition in two thousand and three that was a prescient book about all of the things that we were talking about now and now even this book from one nine hundred seventy or whatever it has never been more important so that's yeah yeah yeah legalization of morality you know what I'm going to ask a sinner and question while the audience gender gets their questions ready.

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To cover a lot of different topics I want to ask separately but I think you know so I'll just say this so this is I think what is the forty ninth anniversary of Dr King's assassination a more serious day the way they want to pay attention to that it's over that he was definitely one who said that health care was a civil rights issue back when right so I know you're worried about the Black Panther Party and I haven't They You've been covering the sickle cell of the Democrats as my own personal research area but I just wondered if you could speak on one thing that troubles me in my own working sickle cell research is again this concept of genomic editing right and there's large research groups who are using sickle cell disease as a.

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As a model disease to test all of their genome editing and when you've got to face with some of them they've actually don't care about the population but it's a great sales pitch for that you know gathering so you want to do in the context of the intersection how we can talk about the research funding priorities access to health care and if you will in your own work have seen changes since Medicaid expansion has hit for some of these underserved communities and how they approach health care and how you could think about that with this concept of people model monitoring your genome first off and then potentially editing.

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I mean the phrase that comes to mind from along this work is this idea of a dialectic between the collective surveillance that it's always you know it's not either or It's not that you're sort of you know always being surveilled and included over included or that you're being neglected and left out but it toggles between these two poles and I think that's where the kind of the agility of our sort of conceptual frames are required to keep track of how some form of inclusion are harmful.

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You know so that the conclusion as a straight forward good I think has to be troubled on the one hand and so when you talk about this idea and keep way was work sort of traces the way the celebrity status of sickle cell disease and how it's often used as a kind of moral I think of it like a moral prophylactic like it to cover up all kinds of things to say but it's going to help sickle cell.

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Rather than think about OK Well have you actually consulted you know patient communities families like are they part of the process have they demanded this have they asked and so I think what one thing that your comment sort of generates is our kind of I think we have to be somewhat skeptical about all sort of claims of inclusion as a straightforward good and to think about process not only the end product like that is being developed but in the process have people help to generate the knowledge of the approaches that we're seeing that we're celebrating right yeah.

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That's right to pick up on the celebrity piece I mean you know sickle cell happens to be as you know through housework his work my work others have written about you know does all the symbolic work often of standing in for black communities right but it also has this bigger import in the history of genetic science right so sickle cell anemia it's discovered in one nine hundred ten it's the first genetic disease in the medical literature so part of the.

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I think way to go when you're talking about Dr Platt about like we're going to fix sickle cell and we're going to do this and that is because this is the thing that we've been trying to fix or use gene and gene therapy was going to work it was going to work on this this is not a complex genetic disease like cancer it's I'm in Delhi and dominant recessive it's fairly simple.

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And it's mechanism we know what what what goes wrong and it's a disease that Linus Pauling worked on I mean you know so it has all of this other stuff and none of that has ever been about black people or black communities or black suffering it's been about moving forward you know the progress of genetic medicine through this disease that was the first genetic disease and it was only ancillary that had anything to do with black people right or you know ancillary but very central right because it's discovered and then a man of Caribbean descent by a white doctor so the story remains to be told about why this patient why this doctor you know we don't know about that of cancer I don't know we don't know about that encounter but so there's that piece of it as well I mean there is something about the surprise or celebrity value of sickle cell anemia that that makes people want to make it work and it because it's the thing that's worked on often so if there's ever a new gene therapy it's a disease that's been around for a long time it's fairly simple so we're going to try these new techniques on it and so it should be a source of great humility because if you know if we can do anything with gene therapy around sickle cell anemia goodness help us for cancer or.

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Other you know other things you know and so you know sickle cell is a very interesting case I think that brings all of this to bear and it's really you know it keeps work really brings our Keith Whaley's work brings our attention to it it's African-American communities that make the case for black suffering with sickle cell and not that it's just a genetic Marvel you know that that people should work on because we discovered it first and this got the ball rolling Superstruct it was I would have a follow up but I would wait and see if the audience Well this is you have a following that was OK so I didn't know you know you do this or do you know somebody or you know do you so why did I wasn't interested so I do a lot of work with a stick a foundation of Georgia and.

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One thing that happened we every year they have a success at the Capitol right where they have a day they lobby the state representative and that and they have a new lobbyist that they had last year and it was this gregarious white man right and he was great talker he's been a lobbyist for other state of Georgia but he tells a story about how when he and his wife had a child the doctor called and they found of their child had sickle cell trait I don't get why he was right and you thought it was because he was Olive complected.

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But I'm the whitest you're going to meet Now the other part of the story is when they go and figure out that he is the one who actually had sickle tree not his wife was a white male mystical trait and so the first thought to get the best part is that he then goes to his grandmother also living relatives and talks about Grandma what's going on back in the day.

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I'm at grandma's only response was her baby have some sweet. Writing So it's going to be back to this concept I think I think it was in your book and maybe you talk about also about how D.N.A. is the ultimate big data right and it actually holds secrets or other complicating things I wonder thinking about this intersection of a black disease as perceived now as we know the races have been mixing they have mixed in the past how that big day.

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No magic finding can actually impact the way people think like that are expressing a desire to happen I mean it's a funny anecdote but and in reality there's a huge and new way of white nationalists that are using genetic ancestry to assert racial purity and we have a mutual colleague who's sort of been studying the sort of online.

[00:40:31]
Chat groups and they're going to publish on it soon to show the kind of meaning making that's happening using genetic ancestry to assert sort of pure whiteness and these kinds of you know I mean this this idea of sickle cell you know sort of alerting them to just laughing on Sesame Street it's happening on a much broader scale and I think you know in the current climate it's interesting to think about how on earth all ends of the political spectrum the very same techniques being used in the very different ways it's not one thing and it's being alert to that spectrum that idea and makes it interesting and also.

[00:41:08]
I wonder you know why we just say this is our friend Aaron off again Aaron's work but there's a there's a French scholar who's also been working as well on. The shoulder on who's been working on White Nationalism in the use of genetic ancestry testing in Europe and this is why I love your example about the international context so you know what looks like white nationalism and his work does not look the same in the US I mean what matters in Europe is whether or not you know what's more white is whether you're closer to Celtic or Norse or whether you're Mediterranean and so they're dealing with a different sort of scale of whiteness that's totally different I mean if White nationalists in the US got something that was like twenty five percent Greek thirty five percent Ireland and whatever you know Scotland or Italy they'd be like I'm white you know but I'm a European case they would be like you're here you're Mediterranean or something great.

[00:42:04]
You know it's just so different. And the glasses are not. Over that's you on the morning with the recliner. OK I want to go over there's a gentleman here OK so. You were. Actually. In. The room. You know. This is just. A loser. On. All of. Them. Really.

[00:43:11]
Yeah I mean the benefit often that's presented is the idea of so say in the U.S. context where we have D.N.A. database that you see that are used in policing and that's heavily skewed towards those who are over police so the justification would then be that we would all be equally exposed to surveillance right and so we would have to think OK so it's like bringing the standard down we would all be equally surveilled or we can question the purpose and mode of this form of governance to begin with the right to ask a different kind of question to say you know sure it would make us equal you know within this apparatus but is that our aim you know you know in this context I would I would travel the choice between you know not having the database of everyone being in the database and saying you know what is what are the the the perp.

[00:44:05]
What is the purpose of this and what form of governance is this working to further right and so I get I get the benefit argument of that I just question it right that I think a lot of you know I've heard that same argument made about you know let's have a national database in this country so that you know it won't just be black and brown people being searched in these forensic you know things but then you know how about we question that the policing mode of policing to begin with that is also interesting because the other thing about all these untested rape kits so forth of having these D.N.A. databases that you can identify perps but that if they are to separate That's a whole other thing but sometimes you have a you know I think it's a really good point I mean I would only agree with with brouhaha about questioning that sort of initial framing but I would also add that even even if we assume the framing it's still going to be unequal I mean societies are inherently about power and stratification and equality and so OK you test everybody everybody's in the database but people are still going to be stratified in discriminated against in the way that that data is used to you know advance the sort of you know this this script of a universal surveillance that in fact is not going to be universal in practice right so.

[00:45:22]
Yes in the back yes. It's all day. So the question is about interracial marriage as the races are mixing what these may have been perceived to be belonging to one group of people may no longer be limited to that group anymore and it from families. You know I mean it's it's an interesting sort of father experiment that that would be the outcome more in a racial.

[00:46:16]
Reproduction I mean I often when I'm thinking about this I think you know again thinking about the preferred game about. What are the pure races that are supposedly mixing right we already have to assume an idea of pure race to conceive of interests right and so I think it's important to step back from our idea I just put it and the scholars and I vaguely.

[00:46:49]
You know I mean by that you know sociologists of knowledge it's like you're presented with a scenario and then the impulse is to say OK what are the taken for granted as you know I'm sions that are built into the scenarios that I'm responding to and one of them is with any time the idea of interracial asserted is that there is a notion of pure race and what we know even if we want to rely our ideas on genetics that African-Americans are among the most heterogeneity heterogenous genius groups you know on the planet so to mix with African-Americans are to be mixed with mixed.

[00:47:26]
In some sense but again the idea of pure and mix is something I think we have to trouble and so the question of whether the increase of that right and it's interesting that the increase you know when we when we talk to demographers if we were you know not patterning our our our mating patterns on such deeply racist sort of kind of practices the rate would be much much higher than it is you know so that's one idea but this idea that then we would then trouble our ideas about what disease corresponds to what race I think that would be a happy outcome partly because we see with sickle cell the.

[00:48:04]
Many peoples whether they have trait or are affected by the illness often goes overlooked because they're not presume to fall into the category that the race corresponds to so someone like you or your guy and we have other examples where because your phenotypically don't look black and people are looking for everything else besides a good self I mean so maybe if we began to take for granted this idea that many people ancestry is very mixed then we wouldn't go in to our diagnoses you know with the presumption of you know this is what it's going to be so maybe that's a happy outcome of a faulty logic Yeah.

[00:48:43]
That's what. We have the leisure Alex. So the question was about your earlier comments about another genomic editing and what would be an improvement and what would not be used and so the question was who would be the ones to make that decision I see that's a that's a great question.

[00:49:20]
A year two years ago a year ago I was in D.C. for this international Gene editing summit that was heavily skewed U.S. Europe a couple Asian countries and almost no one else maybe a couple South African researchers so even so there is this there was staging of an international summit to have some deliberation around this that was already a very distorted understanding of what in the International is and then within that it was circumscribed in terms of what forms of expertise were necessary to have this conversation that was being staged again heavily skewed towards the science a little token ethics and policy but what was truly missing.

[00:50:04]
Was a disability Justice sort of. Voice right not just one person but sort of running throughout So this idea you know the refrain nothing about us without us it was interesting that you know what often stands then for something like a disability perspective is really like patient advocates who want the science who often are cheerleaders for the science but any perspective that would run counter to that or trouble it or say perhaps we don't want this it's often in the screening and then the staging is filtered out so it's not even in the room so it's as a starting point we need more of that as part of the conversation and someone who's written about how to perhaps structure or dislike a decision making process or got a governance of something like Gene editing is a scholar at Harvard Jassem out she wrote with some colleagues about you know what would it look like and the thing is it's not something that would just pertain to Gene editing it would have to do with so many other developments in science and medicine where in fact what we want to do is kind of cultivate both public conversations and deliberation and thinking around so many so many different things not just Gene editing but perhaps Gene editing as an opportunity to say the stakes are so high because it's not just affecting those who undergo any kind of procedure but it's affecting future generations who have no say in the matter whatsoever and so the stakes are even greater that it's kind of forces us to say we need to figure out what.

[00:51:41]
What deliberation and governance would look like I don't know and I don't think anyone has an easy answer about how it would but just to prioritize it prioritize the process and not simply assume that we all know what's good and what's what's not. You know. Getting right at the end of her comments to the point I was going to make which is that when you're talking.

[00:52:04]
About chain ending technology it's about future generations but it's future generations the earth over right so if you're changing the germline it's actually doesn't it's not about the United States or China it's changing all of humanity and so the governance issue actually and the bioethics issue is more profound and more deeply grave than I think anything we've ever had to deal with and we really have to so while it was good that there was this even limited international summit the questions that we have to deal with don't abide national borders I mean it's really about you know much like climate change it's like it's about our future as a human community and it's at our peril that we think that there are you know this in a National Academy of Science Committee or these sort of small in cities that are supposed to make these decisions we really have to get our act together with this it's over it's a real problem and we can't even get our act together and cases of use of genetics when you are just talking about your family right so consent forms for genetic research you don't have to ask your parents or your children right but all of them are implicated in any kind of Clinical Genetic research that you do there traces are dwelling within you right and it has implications for them as well and so we can even wrap our we can't get ourselves from a Neil liberal kind of liberal individual frame thinking about genetics we can't even move there so until we can actually get there and sort of say you know my genetics don't belong to me they actually belong there shared by in many ways this group of people there's no way we're going to be able to do the bigger work of thinking about the human genetics in a kind of human scale.

[00:53:46]
Put it. Out for. Every. Time. Yes You know there's a great line. There are a few ticks out. There. But. There's another question from the gentleman the little. Girl of the. So I'd like to. Get. In the way. It's right. Here. So. Right. There. You. Go. I don't want to tell.

[00:56:05]
Too deep in the rabbit hole but I'll just tell you how I start to think about a question like that. I tumble between so in terms of like what do we do with this critique I toggle between a kind of politics of autonomy the kind of black committed we're free doing ourself forget the system you know like figure out health care you know so I go between that and a kind of politics of solidarity which is that's idea of white people suffering you know in.

[00:56:35]
Often unintended ways in a race of systems which would say let's figure out how we're all harmed and then work to build solidarity and then for just structural critique in a structural kind of movement based on that solidarity right and so those are two very different ways and sort of based on my mood based on my just.

[00:56:59]
Kind of you know level of hopefulness and the years between like forget it and come on let's work together. And so that's just kind of the shorthand version and then the other thing would be to say is that I would require everyone to read your work as a next step is to think about how it gets under the skin this idea for example the work that's being done around telomere length and social stress.

[00:57:26]
There's a great to bring in the sort of after Futurism and speculation there's a great series I don't know and if you've seen called expanse you know you should go watch an expanse OK good. But if it's one of what it's so effective as and I think actually you should screen it in your classes is that now where we're at this planetary moment where humans of colonize Mars we've colonized the asteroid belt and partly a function of the power and hierarchy those abscesses of humans who have been born and raised on the veldt partly because of the crowd gravitational changes and so on they have internal up their bodies now Lou.

[00:58:04]
Different not dramatically like alien but in various ways they look different and they're affected by growing up in this different environment they're weaker in certain senses they have showed little signs of this and so it's a way of thinking about how the process of colonization the process of resource hoarding because they're at the mercy of Earth and Mars and so all of the things that we know is happening right here in this country it takes us to a planetary level and shows how it's not that biology you know this hierarchy doesn't affect biology is actually gets into the biology and it begins to change our physiology right and so it's an interesting way to distance ourselves from the phenomenon in order to get a keen sense of what it takes and it's worth pointing out that there is a movement among the belters to overthrow and to address the power inequality so there their response to having health disparities is not to say Give me a pill for it give me a genetic and a fix for it is say to overthrow the power relations that's causing this resource already that's causing us to live under this condition so in some ways it's a it's a metaphor for perhaps approach that's much more structural much more fundamental and less by a medical and much more social movement yes which is where I mean you know I think those the power of social movements for transformation I mean you know I think I'm still very humble in this moment in this specific political moment today and so I think.

[00:59:36]
You know I think that in the wake of the Obama presidency there are a lot there's lots that we can be critical of there's lots of geopolitics there's lots of Bill we reached the limits of symbolic representational politics but it's also the case that when President Obama was a senator in two thousand and seven he was working with Kennedy to get the Genetic Information Act passed the Gina So he was the second signatory on that.

[01:00:03]
And. In two thousand and seven when they were trying to do a version of something you know they were trying to advance precision medicine you know which we comes one of his later term moon shots you know he goes on record as saying there's no way you can do anything that looks like a procession medicine initiative if you don't have Geno first and so I think and that's not about his blackness per se but that who's in political office actually matters and a half thoughtful people who would actually thought about the Jena act that they're now trying to unravel to advanced age thirteen thirteen and the ability for employers to have access to your genetic information.

[01:00:41]
That matters and that changed and in a day that changed with an inauguration you know and so I also think thinking about your important research and the research of others about how. Racism is embodied and this is the most of the social movement piece what we've learned in the last few years is that.

[01:01:01]
There's not a lot of care concern for what happens to black bodies what happens to them on the top of it you know explicitly and what happens to them interiority So I feel sometimes. You know on the one hand we should be saying my gosh I mean we one of the things I write about the Black Panther parties they change their over the years they change their template platform a lot nine hundred seventy two they had a new point six that that basically says we want to be in charge of our health care and insure and we want something around the phrasing is that forms of impression that make us sick is effectively what they're saying right this is before we had we could measure telomere Lance right is already making the assertion that oppression is embodied in our bodies but I also worry that without a movement like black lives matter nobody cares I mean we've actually reached this amazing threshold in research where we can actually demonstrate right that racism can be embodied that racism is literally killing people yeah yeah and likely sexism too in the same you know any kinds of this kind of day to day.

[01:02:04]
Low. Aggression and discrimination but it's also at a moment in which. Much like a hundred years ago much like Saif I black bodies can be snatched off the street snuffed out on camera and full view without consequence and so to me that's you know in the response there is a social movement one and I think to your point our response has to always be social movements in electoral politics and some kind of sometimes lot seem to me sometimes antagonism.

[01:02:37]
I'm not happy about that we have in the government but more importantly when I know that believe me I have a question OK I know you are going to take to the question of us I mean with. The president. What. I see. Yeah. Yeah I mean that's kind of what I was I was acknowledging the infusion of kind of epigenetic analysis into this by reference to the telomere sort of research around town there but I do see.

[01:04:04]
So on the one hand I think often what motivates that body of research whether it has to do with tell me as other biological markers is this idea to look for how oppressors and stressors are invitees But the idea that kind of bring it even more sort of depressing in terms of a laundress last comment is that then what we do with that you know how that how what kind of sense what kind of interventions are then attached to that.

[01:04:31]
I'm not very hopeful about what we do with that knowledge and fact I'm so sort of ambivalent about it that I think you know I often question like Who are we producing that knowledge for who needs to be convinced that racism is bad for your health right what that next taper that Premier is it like a whole who need who needs the justification so in fact I'm I'm I'm I actually feel like there is a kind of.

[01:05:00]
If there's a kind of perverse quality to the never ending production of knowledge about how racism is embodied because who who needs to be condensed and what else can we be doing with that energy that were pouring into research that could be able to shift the levers of power rather than deal with two year peer review process ease and so on you know so I I mean on dark days that's where I.

[01:05:25]
Get attention and I try yeah the so I try to you know not to stay there too long. But I do feel angry sometimes about the need to to then say well it does it gets under the skin the seat look at that look at this show you know it's like I already know that like my grandmamma knew that you know that she made me no peer review nothing to tell me that you know that what was bad for my health so.

[01:05:50]
Even. You know what doesn't want to. Live is that I'm a poor. You know I think the answer lies in your question so I think that you know to the extent that you can you know afford to pay someone to either use a pigs or you know to create or clone the organ for you that's about access to resources and you know you can really see it played out and recent conversations around the A C. A It's very clear that if we're going to get anywhere close to anything that's like a baseline coverage for everybody it's not going to include that and it's very clear with some of the particularly the comments of our politicians that they don't you know those kinds of advance and sort of path breaking technologies that would save lives are not what's really interest for us as a national community in the way that the conversations are unfolding so they're very much to you know elite tools I don't know enough about I mean I know about animal cloning I don't know enough about the cloning that's happening in the laboratories to be able to think about.

[01:07:21]
The kind of matching that has to take place for a clone to work so is it you can you can educate me on that So is it a clone being made of like if it's a kidney you're good working kidney as opposed to the bad one or I'm not sure actually you know who's being who's being harvested or you know or who's who sues you know genes are being or whose tissues being harvested to be cloned so that might be a part of a question we might want to ask as well but I don't know about enough about comic human tissue cloning to to know how to answer that we're going to OK You're OK So just for the sake of the photo most One final question then we'll have closing response and others in the form of more that will be still here to have informal conversation or the like to come up because in the conversation and grab a book in the back while you're on your way but I'm.

[01:08:04]
They want final question and then I have caused so. Many conversations around when we start to raise. Them and not just. Race and then we call them to be able to address the public write history for us thank you and then treat. The like you know major cities and retreats and surviving.

[01:08:36]
And what I'm hearing in. My own head it's not something that we can always see or understand we you know a family might be fighting a particular issue in their household but they're not connected to really all the other families who are fighting. In a way that makes it makes sense.

[01:08:59]
You know two things are coming up for me that you know all these young girls. See. That in other places. Like in Europe that yes we will be talking about genocide we will be talking about it is happening it's happening in Eastern Europe but my point you know that that's her right now is you know I say first.

[01:09:23]
Because you're taking these girls away. That I don't necessarily hear that. And then on the flip side I think my my husband. And one of the things that I remember initially we did anything they said once you start taking. Not be able to reproduce right and. If you're going to do something you've got to figure it out before and so there's an interesting around these types of medications that are created.

[01:09:58]
By all of the things that are going by that all right. Yes. Yeah experts say. Well I'm sorry for your loss I'm really I can't imagine what that must have been like to live through that. So. Our ancestors black folks who have been fighting in the trenches for years have used the genocide frame for as long as we can imagine so it's not that that frame is not new the to the kind of technological frame that you were sort of interweaving with it I think it's new but.

[01:10:42]
You know civil rights activists in the early twentieth century the Black Panther Party is a genocide frame around the neglect of sickle cell anemia was part of the way that they talked about it. That it was an attempt to with by authentic the state and philanthropies neglect of it was an attempt to wife wipe out you know an entire population effectively because it disproportionately affected you know one group of people.

[01:11:02]
So you know I think that's partly true but if you don't mind me being metaphorical what I thought was so interesting about what you were saying I think is is true also about race and racism which is that the fight and about this point that you made so eloquently brouhaha is ever you know about you know whether or not and you can win the day by proving that racism sort of destroys bodies and the point of it is that when you can never win the day and much like.

[01:11:28]
You know sort of chemotherapy that's killing something it's exposing to another fight you know the struggle that we're engaged around forms of enter sectional discrimination there's just strategies are moving constantly moving it's a dynamic ecology and so you know I think that we need to talk real hard to prefer aim I mean we need to stop thinking about winning the day and realize that we're an ally constant kind of battle like you know that they'll be you know back and forth back and forth that's what I would offer.

[01:12:02]
Wow thank you all very. For participating we would even I suppose if they really think I just want to say one thing just to just honor Rouhani and her to her brilliance of her genius and. And to. You know we're not that much older her than her but generationally we're probably two academic generations apart and you know she does work in a field that like I had to work in the shadow of Troy and Dorothy Roberts I don't know how you like you know Keith Whaley how you write a sentence working in the shadow of any of those people but you know by the time he was doing her work you know choice babies keep babies during these babies and you know and yet she's carved out this kind of amazing to stink of space and the space committed to justice and I just at my and just like that is thank you thank you both for the love the way you so I did it with everything that's my thank you all of the both of us thank you thank you thank you for a part of many of them both back with those I think it's a conversation that's a few more behind speaker of the year and so far I don't want to talk about your plans.