Saying, yes its pretty bad. When you talk to caucuses on both sides and you get a glimpse of the inside players. Now from the 15th annual harlem book fair a discussion of science and health. This is an hour and 15 minutes. So our first panel is titled mythologies of race, good science and health. Before i introduce our moderator i also want to acknowledge rich who worked with me tirelessly in pulling these panelists together , discussing and coming up with the ideas of what are the conversations that we are going to present, what are the conversations that impact us as a community and we should discuss and see if we can find a way in or a way out. So again thank you so much, rich. Our moderator for a first panel is earths are sheldon krimsky. He is the author of genetic justice, dna databank in criminal investigations and civil liberties. He is a professor of humanities and social sciences. He is that tops university so you had me there. Tops. Oh that stuffs. You know how these academics write and visiting professor at workings college. Please welcome professor sheldon krimsky. [applause] its a real pleasure to be moderating this distinguished panel and my job is to simply put forth a question and conversation so we can get started very quickly. First of all let me introduce the panel members. To my right is Alondra Nelson who has written body and soul the black Panther Party in the fight against medical discrimination. [applause] to her right is samuel k. Roberts who has written infectious fear politics disease and the Health Effects of segregation. [applause] to his right is Jonathan Metzl who has written the protests psychosis comes to how gets a frame yet became a black disease. [applause] and last but not least to his right harriet washington who is deadly monopolies the shocking corporate takeover of life itself and the consequences for your health and our medical future. Please give her a welcome. [applause] i am going to start the conversation among us by first asking what mythologies did we all learn from writing our books that we would want to share with the audience today and discuss amongst ourselves . I am going to start with three myths that i learned from writing genetic justice which was really about forensic dna. You know when you watch all these crimes, programs on tv. Dna rules it seems so these are the three myths that i learned. First of all myth number one that dna profiles are like fingerprints. Not true. Very different. Myth number two is that dna evidence is infallible. Also not true. Its not infallible for prosecutions and its not infallible for exonerations. Myth number three, collecting dna profiles is raceneutral. That is also a great myth. So let me turn now to alondra and maybe you can tell us what some of the myths were that you discovered in your work, body and soul. Good afternoon everyone. Good afternoon harlem. Thank you for the introduction sheldon. I guess mine are three truths than three myths. I began my book body and soul with the Sentence Health is politics by other means which which means to suggest we are talking at the issues of health and science we can be talking about test tubes and Laboratory Benches and Scientific Research but we are also talking about contests over challenges to resources over Health Care Access over access to scientific information, Health Education and the like so that his one true is some. The second is that the civil rights tradition, the black freedom tradition, that the tradition was always a Health Activist tradition and a Health Politics tradition so you can inc. Back to marcus garveys organization which had a cadre of nurses called the black cross nurses. We can think back to the powerful and brave Fannie Lou Hamer who talked on the stoop about being sick and tired of being sick and tired and gave us a poignant euphemism mississippi appendectomy to give voice to the experience of poor black women in the south who were sterilized against their knowledge, an issue that has been in the news in the last couple of of weeks in hell of vonya and lastly i want to offer for you the black and the party was a Health Social movements. The black Panther Movement is a rorschach test for how we think about blacks politics in the last 20th century in particular but what we dont appreciate so much is that they were deeply engage and involved in issues of Health ActivismHealth Equality and access to medical Care Services in the United States. In particular as i discussed in my book they were engaged in getting people information to access to services that were under mentioned that we didnt know enough about, that the services were underutilized or not provided enough for such as sickle cell amenia a mania sickle cell anemia. Harry its prior look that many of you probably know medical apartheid the black Panther Party was engaged in protecting black minis from overexposure to the bad forces of medical experimentation so i write about one instance and their others and i hope other scholars will carry it forward but the black Panther Party participated in the 1970s in a struggle to stop the university of california from using, from introducing medical protocols and research that would have disproportionately affected black and brown men and boys in Southern California. So they provided services and ways to respond to how black communities were underserved and also detected black communities from the way in which we were disproportionately over exposed to the worst harms of medical research. Samuel, what about your findings . Thank you very much. Good afternoon everyone. Similar to alondra i found some through this as well as some myths in my work. I focused as a historian on the late 19th to the 20th century which in a lot of ways is the era of jim crow but also the era of the birth of modern Public Health in United States and in doing so i found that for many black communities which were increasingly urbanized communities there was one particular disease that claimed the most lives. One cause of death which above most others claimed black lives and that was tuberculosis. This is a disease contrary to the myth of racial predisposition was actually one of Living Conditions in poverty so in many ways we find at the very birth of Public Health in the United States this mythology that while black table are dying of tuberculosis because they are racially predisposed when in fact this was a way of masking some of the often impoverished and just plain terrible conditions in which black people were forced to live. This was largely a product by the way of not incidentally residential exclusion from many jobs. The truth or that was the first truth and the first myth that i found is one of race neutrality of Public Health. The way you mentioned sheldon of the myth of dna and genetics or forensic genetics. We tend to think in the history of Public Health has it been this rational science that has emerged as a way of thinking of epidemiology and the birth of assumptions which works quite often against the people was supposed to serve. Finally the second truth i found is much like alondra has mentioned in her study that there has always been a black Health Advocacy and the question is where do we look forward . For a . If you always think about the men, usually white men in white coats in hospitals as being the locus of health of knowledge production we may not lined out from the early 20 century there but in fact we find clubs ymca ywca, churches a sonic orders all being very much engaged in their community and Environmental Health in particular. Thank you. Jonathan what about your finding . Thanks you so much. Its a true honor for me to be here today. I worked on race and Mental Health. Im trained as a psychiatrist and i look at the historical trends about Racial Disparities and the diagnosis of different kinds of Mental Illness and the research that i did for the book and that i continue to do looks particularly at racebased misdiagnosis or over diagnosis of schizophrenia in black men three people might know this but starting in about the 1960s there were a series of Research Findings that found out of the blue that all of a sudden people discovered that this illness of schizophrenia was being overdiagnosed in black men at rates of anywhere from four, five, six, even seven times more than any other other group and to my surprise in researching the book i found actually this wasnt ice the case even though there is a long history of the relationship between race and sanity going back to slave times when we had diagnoses about slaves who ran away must be crazy and schizophrenia actually was a largely white diagnosis in the United States through the 1950s. All of a sudden in the 1960s kind of seemingly out of nowhere there was this disproportionate over diagnosis that has actually continued to the present day in which africanamerican men are dramatically more likely to be diagnosed. This is something that is actually at odds with genetic science and the way we think about the biology of Mental Illness. According to biology or genetics as we know it schizophrenia is an illness that shouldnt have any race or gender balance because its something that should happen at the level supposedly beneath the levels according to biologists that should occur in 1 of the world population. Regardless of who they are or where they live. My research looks at the question of why in the 1960s particularly did this start to happen and i also looked very specific weight at a hospital called the ionia State Hospital for the criminally insane in michigan, where it was largely a white hospital through the 1960s and all of a sudden in the 60s and 70s increasing numbers not just of africanamerican men but actually African American men who participated in but our protests and then members of the nation of islam and other groups or had participated in some way in different riots. Somehow they made their way to the hospital and they were diagnosed with Mental Illness. And so that is not a huge surprise when we think about the ways that politics and the diagnosis of mental, seth got together in this country but i would say the main myths that i looked and one that i have already suggested is that this increased rate of schizophrenia was somehow the result of something to do with biology or genetics and of course a lot of people argue that at the time. What i have found that is his almost entirely a social phenomenon that was linked to a series of changes and the two i will put forward. One was that people cant go there was a lot of anxiety about the political moment and people were linking political protests at the time to insanity in ways that started to make sense to people in the second was the diagnosis of schizophrenia changed in 1968 and the official diagnosis all of a sudden said anger or, hostility and projection which means blaming other people for your problems. In a way it made it very easy for doctors to see men who were protesting as Mental Illness because of these criteria so that myth number one is biology. Myth number two is that this misdiagnosis happen because these doctors were is proportionately racist. What i found in doing a lot of interviews was that some of the doctors were pretty wellintentioned and some were not. And so really it was the structure that they were in, the structure of the diagnosis and in a way they were all using the diagnosis. It was a structural issue and the third myth is really how we deal with racebased misdiagnosis in psychiatry or Mental Health. Our approach in my profession often is to make the clinician more sensitive to racial or ethnic issues and of course thats very important but what i show in my work is that actually racist assumptions are embedded in the structure of the Health Care Systems did i argue that we need to teach the medical system to be what i call structurally competent rather than teaching doctors to be culturally conscious or cold truly sensitive trade. Thanks you. Harriet i just wanted to say a word before you get your chance and that is in our constitution the one right that is listed in its, not the bill of rights but in the constitution is the right to take out a patent. Amazingly enough, but that was builtin by Thomas Jefferson and your book deadly monopolies questions some of that so tell us what you found. Use your mic. I am very happy to be here and excellent question. I want to point out that Thomas Jefferson was not actually a fan of patents. He didnt like them very much. He didnt really want patents to be issued. He bowed to pressure by James Madison and others and the patenting of entities that we typically dont think of as patentable especially things like parts of our bodies, especially things like medications that we need to live has always been hotly contested but people who had issues with it tended not to be people who were corporations who would profit from them. Although there was always that tension, gradually through the laws this friendliness towards patents by people who were going to profit by them triumphed and now we have a medical system that use the patent as commonplace as something that is expected. Im not sure if i addressed your question but i think theres a tension there and as we were discussing earlier in the green room we had some recent news and that the patents on Breast Cancer genes that were held have recently been struck down. I think that is a move in the right direction. The mythology though, the mythology there are too actually. First of all theres the myth that pharmaceutical Companies Like to promulgate as a rationale for doing things like patenting genes, patenting medications which they then charge you and me and outrageous on affordable price for. Their rationale is we have invested a huge amount of money in time and interest in developing these medications that we have a right. In fact we have a need to charge you a lot of money to cover the cost. Without our investment he wouldnt have medications for hiv disease. You wouldnt have medications for tuberculosis, for sickle cell anemia and all the things that threaten our health so you need to pay us this money so that we can continue providing them. That is a myth. The reality is its not the corporations who are investing this money. If the federal government. Where does the federal government get that money . From yukon pay your tax dollars. You are paying for these medications and in fact you are paying for them twice. You are paying for them to be developed in paying outrageous amounts of money to pharmaceutical companies who want to charge you thousands of dollars that you need to stay alive, stay sane or stay healthy. Another myth i want to promulgate a something that i hear frequently. Sometimes you hear about research being done in developing countries nigeria brazil cuba thailand and often there is a complaint that the ethics have not been adhered to properly. People are not being treated and are not being tested under informed consent. They dont really know exactly what is being done to them. They havent been given information to agree. They have been given agents without their knowledge so informed consent and other abuses that surface and one thing that is a response from the company as well you have to understand we are testing these drugs for leprosy in brazil and perhaps we have cut a few ethical corners but there is a high rate of leprosy in brazil. They needs these drugs. Thats a myth. There is a great need for these drugs in developing countries where they are testing drugs that these countries do not benefit. In fact Michael Kramer at harvard to to study in the found a 20 year span, i think a 24 year span that of the 12,033 drugs invented by pharmaceutical companies only 14 were for use in developing and of this 14, five of the those trucks for animals and the people. In the end for drugs, could afford drugs of out of 1233 were advised for people and the developing world and yet one third of our Clinical Trials by pharmaceutical companies are not being conducted and the clinical world because its cheaper. Thats a very important myth so the rationale for these high prices and the rationale for bypassing people in the developing world and condemning them to poor health doesnt hold water. I want to backup for a minute and address another thing that i addressed in my book medical apartheid. One might say the entire book is addressing the myth and that is a myth that was used to change the law of that medical research. Its a very prevalent myth. Africanamericans tend to be underrepresented in medical research. If i say its a myth people will produce data to show me that im wrong. The problem is many africanamericans who have been used in medical research do not show up in the data. Research has been done. Its been done without their knowledge. Its been done in the shadowy secret way and its also not necessarily therapeutic. As i detailed in medical apartheid a great deal of nontherapeutic harmful stigmatizing research has been conducted in this country without being fully documented or full