I would like to thank all of you for being here. You can see how much work is here being done and can be done on the odd sounding pairing america and the holocaust. I hope you will continue to come to our programs. Good evening. [ applause ] [inaudible chatter] facebook. Com booktv is where you can updates about our shows. Kelly e. Happe is next on booktv. She talks about the material gene after the human genome project. This is about an hour and takes place in nashville tennessee. I am amy non. I am please today introduce to you professor kelly e. Happe who is a professor in the Communication Studies and the women studies at the university of georgia. She has a ph. D in rhetoric from the university of pittsburgh. Rhetorical theory, cultural studies, women studies, and culture science. She is talking about her book the material gene. It exmirrplores the social understanding of gender. Lets welcome kelly e. Happe to talk about her book. Thank you so much for being here. It is an honor to be part of a wonderful event. And thank you cspan for choosing this session to broadcast. I have been invited here to talk about by new book the material gene. It examines the science of genes and that is the investigation of the role of heredity and health. My interest in scientist started when i was persuggest my masters in communication pursuing at baylor university. A professor of mine mentioned the book the structure of scientific revolution. In the book, they argue that scientific change unfolds in anything but a selfevident way. It is because of Critical Mass of science gain the power in part of persuasivetatic persuasive tactics coons book was a revelation. And i realized any body of knowledge was among a variety of alternative to us when modeling and explaining the biological world. The process is guided by social conventions particular to the field in question. And peer review is carried about upon agreeing to, we must think of scientist as embodies working in institutions that are part of larger economic systems. I look at the language the scientist use to describe research to other scientist and more larger public audiences in order for to trace the connection of social values and the process of scientific knowledge being made. By book was made to correct conceptual blind spots about genes a field of nature and that has been organized by a culture that has been salient and that concept is heredity. My talk is around three themes of the book we need to question the poplar narrative of the genomics and being concerned with Public Health. This is a lesson i learned from coons back is we need to question a concern logic of progress. And second is we need to rethink the abstract we way we tack about genes and shifting from code and shifting to people and persons and their bodies. I argue we need to correct for the limited frame through which medical ethics can and has addressed genomics into Public Health. The Eugenics Movement marked r c racism movements in the late 20th century. Mendels peace studies were important to this. His work introduced the nation of recessive traits producing anxiety because you could be passing on recessive genes to your children. During this era, they held efforts should be held to propagating desirable traits. In the 1920s, the passive of reactionary sterilization and immigration laws were passed. The dominant news between eug i eugenics and genomics is the former is between 19001930 and any residual effects are attributed to a few sciences searching for the inferority of women or people who want quote unquote designer children. This is an example of heredities capable of switching. The Eugenics Movement was exploited with the industrial revolution. Of particular significance was discourse could, like the middle class counter parts, have a world few that identified them with upper class or workers of poorer immigrants. Genetic engineering instead could produce better behaved leaders and faum followers alike the critique of capitalism was a basic of eugenics but it never recovered from the free market by shifting to the technological interventions of science. It advanced but took part in the world view stripped of historical responsibility. The case of public house best shows the kind of shifting focus from social structures to inherited susceptibility in a contemporary context. The role of synthetic chemicals has increased and with that came the need to test toxcitiy but most are not testing before going on in the market in the United States. This is in contrast to the European Union which is must more likely to test. This is becoming important in influencing environmental scientist and other thought leaders in the field of environmental and Public Health policy. The tern to naomi goldstegenomi some people are susceptible to toxins in the environment. It seems it is almost always genes that explain the power. This happens in a couple ways. Genomics introduces a different spatial dimension. Moving from the context of the body to the body itself. It introduces away from other factors. Together they cast mutations as privileged sight of knowledge and casting doubt on understanding the histories of embodies experience of the natural and social environment or the needs to focus on the publics exposer regardless of if the actual affects can be obtained. This seizes to be thought of as pollution at all. Instead, inherited genetic mutations become the polluting agents. And only genetically susceptible people can and should be protected. That genetic mutations are the only knowledge and it is the individual who takes responsibility for health. And regulation is in efficient at best and counter productive at worst. In the particular case of Breast Cancer, environmental models show different types of exposure over time and investigate different routes of exposures. The link between organo clorine and Breast Cancer. This thinks about ways to prevent this from occur. The growing gene of prepared research where the investigation by the body can repair environmental damage shifts to womens bodies. The actual exposer is less important than how the body processes them. And this is the significant remaking of Public Health practice. Exposers are only meaningful in light of the various susceptibility gene types in which women are placed. The rationale for managing exposer are whether people who are genetically susceptible are open to be protected. This ought to settle debates about environmental regulations. In a 2005 study on lead and children, this study reopens the debate as to lead testing should be Standard Health practice for all children in all areas of the country. This is what i see as the legacy of genomics at work. Especially the field of environmental genomics. The shift and attention away from the world in which people live. A world that can be changed for the benefit of all to the bodies marked with pathological inborn traits. I want to rethink the abstract we talk about genes. Lead interaction shows why genomics attention to the individual is important because it chose an approach that is personal, it doesnt capture the entire people. Populations in genomics ends up meaning race or ethnicity. Those familiar with the human e genome project said they were 99. 9 percent the same but the 0. 1 of variation is what garnered the interest after the project. So the example of the so called brac1 and brac2 genes. Most of us inherit two working copies or alleles of both genes. A similar percentage do not. For those that dont the risk of cancer increases. If a woman inherits only one good copy, if that one working gene stops working, cancer develops. Since researchers began testing for this, many if not hundreds have been documented. Researchers found a mutation among women who were not related but they were all jewish descent. Shortly after this, africanamerican women became a group of interest because the argument first was that because they share african ancestry it is possible we might find one of these brac1 or 2 mutation that is justified toward the women and that would justify screening for them. And there is growing evidence in health dissparity in the difference of black and white women in Breast Cancer. They can they can explain the differences since early diagnose is seen as a marker of hereditary predisposition. The question arises might this be explained by the way of genes. Despite investigating ancestry, content of orgigins. This switches to say that they infer a biologically defined group. This happens in the couple ways. First is what i talk about is tumors is the new material of race. The research hasnt resulted into the i dentification of mutations that would justify targeting africanamerican women for testing. Researchers have discovered a novel way of rethinking this and that is through the similarity of Breast Cancer itself in africanamerican and west african women. Breast cancer has become an observable phene oh type of an underlying suspected geno type. Breast tumors as an expression of underlining genetic makeup is possible because of the shared difference that justifies the hypothesis that health dissparities are a phenomenal. That is the way to say the way black and white women in the u. S. Difference is the same way in the africa. Mainly the wage and the type of best cancer their diagnosed with. The studies that compare african descent and african abroad allow that they are are definable populations. The consequences of this comparison is by grouping africans and africanamericans together in order to understand blac blac black white differences they are privileges african ancestry. And considering for the purposes of comparison the way in which researchers talk about cancer susceptibility in white women. According to the data sited by brac researchers white woman are more likely to get Breast Cancer, less likely to die, and more likely to be diagnosed with less aggressive treatable tumors. This kind of profile would suggest that ancestry might explain this and european in this case. But white and caucasian have never appeared in the title of a study like this. No studies exist of white women in the United States and europe. But we have them being linked within and across particular nation states. The second and related way in which this research is racializes back women is the way the research is marshaled in this area. There are two notable ways in which genetic diversity has been used to reject race and first is the claim most diversity is found within the groups not between them. Second is showing that we are all genetically the same. The range of all of the diverse variance of the genes has provided new evidence. The language of the profile of black u. S. Women has to come charact characterize the research. Researchers use a diverse spectrum of brac1 that are unique to blacks that are african decent. Or one that is vastly different than individuals of european desce descent. Or they talk about distinct mutations not reported in caucasians. Genetic diversity is a phenomenal that suggests the impossibility of race. In terms of medicine, confusing race and ancestry could be devastating for practice. Racial profiling is being criticized that it privileges african ancestry. But it is important to consider that in a larger social context in which scientist and the lay pubic believe in the biological bases of race that the use of the word like you network and distinct matter. Racial catgory isnt the same as r racism but they consider higherarc higherarchy. And we are less likely to state the Society Might explain the Breast Cancer that people are studying. For example, if we think about the relationship between racial discrimination, social isolation, stigmatiization that people experience it will help explain the Breast Cancers we are seeing in young africanamericans. So Breast Cancer prevention would be bound with antiracism and poverty initiatives. The third purpose is the show all limits frame in which ethics has and can integrated the ge m genom genomes. Before a woman submits to the test she is advised to have counselor. The counselor goes over what the test is going to mean, how to interpret the information and what range of interventions are available to a woman who test positive for the gene. Nevertheless the Decision Making process is limited by the nature of the information provided to the woman who is told she is at risk for cancer. This isnt necessarily a bad thing or something that should be overcome but an unavoidable factor of risk. It is social knowledge. And even larger more profound conceptual question is how is the meaning official meaning of healthy and diseased. What does it mean to ask on risk . Is risk the disease . Consider for a moment, this is called problematizing the familiar. Women are electing to have their breast removed and this is more radical than a lot of women with Breast Cancer. I talked to three Ovarian Cancer genome doctors and how we think about risk is bound up with cultural values. Preventive surgery for the gene became topic after angenlinlin i jolie went public about removing her breast and now she is planning to have her overies removed as well. It increases risk of ovariovari well. It is one of the deadliest cancer. And women thought to be at inherited risk have opted to have them removed well before the genetic test for genes. It wasnt until 2002, that well designed studies of prevented removals were carried out and it showed the likelihood is reduced. But what the studies argued was a shift in language from cautious suggestion to urging or a shift from probability to fate. Whereas women with Ovarian Cancer prior to the revolution were thought to have a 50 chance of getting the disease, now the brac carrier is 60 up to 10 yet surgery is a given. It isnt a matter of whether but when they will have the surgery according to the recommendations or guidelines. It isnt without its own problems, however. First, it carries the risks normally associated with surgery. It doesnt complete leo lim nature the risk. Some are diagnosed with other cancers after. And the surgery entering menopause is related to Heart Disease. Now, you know, these risks tradeoffs can be taken care of my taking hormone replacement therapy but the relationship between hormone therapy and Heart Disease is spotty and it increases Breast Cancer risk. It isnt the case of Health Benefits of intact ovaries are ignored, but the treatment dont take the intact ovaries to be important enough to weigh against the Cancer Prevention. The short and long term side effects take on unimportance of given reducing cancer at any cost. They presume that ovaries enable procreation but nothing else beneficial so they are dyspei disspenceable. Ithol call this i call this the symbolic reduction of ovaries. That means the one exception is biological motherhood. For women at risk of Ovarian Cancer, the politics plays a role because the surgery results in infertility. So it is recommended after child bearing is complete and this satisfy the ethical claim. There is no other reason of postpopos postponing it all together. This does provide gender norms. If a woman thinks about putting it off beyond the age of 35, the physician has to consult the medical literature that determines the risk to be unacceptable. For more carriers, early motherhood is necessary in order to reap the benefits of the surgery. There are many reasons put off childhood education, career, women have been told this decision, whether or not of their ownmaking, has psychological cause and for women with the mutation postponing risks certain diagnose of a deadly disease. When i was writing the book i decided to read and construct my own historical narrative of the ovar ovary. Early practitioners of ovary removal drew connections from their organs and nature. The term normal ovariotomy was formed. It was poplar in the United States and europe for conditions put not limited to menstrual madness, epilepsy and hysterical vomiting. And all instances of Mental Illness was linked to the ovries. This is one manifestation that reproductive organs were central to personality. This was discredited luckily. But Ovarian Cancer is opening the doors still. 300,000 of these are performed into the United States each year and most of these are for the stated purpose of reducing ones risk of cancer. Hence the debate in the last ten years of so of whether there the removal of healthy organs is safe. But not being evaluated for genetic women at risk. The racial stratified society has to be taken into account. One is struck by the contradiction between the privileges of young motherhood and Cancer Prevention language on one hand and the pathology of the same and motherhood in general for women. It was possible because of the belief that the exercise of their rights compromise. In contrast and the case of black women the source of such threat has been their presumed hypersexualty or fertility. Whatever this surgery has done to reproduce, the important of white fertility isnt in doubt. Policy makers of all political persuasions have directing this toward black women trying to talk about crime. The history of sterilization bears out race. I think if the history of is apt anymore given the recent evidence that illegal sterilization in california prisons. So, the ovaries of black women are targeted for removal and they are no longer seen as radical invention when cancer comes into the play. So differences between black and white women are explained in part by the fact that africanamericans are likely to be diagnosed at later stages. It seems as it unfolds, regarding women and race, it is unclear how genetic testing will transfer into the beneficial benefits for africanamerican women. It might be the case they are part of problems associated with this surgery. To briefly conclude, what the book thought to demonstrate is that these find their ways into the thinking of research and scientist working in the field of genomics. Race and heredity play a role in what researchers normally consider to go the body and how we come to understand it with health and disease and recommendations on treatment and prevention in the medical and Public Health. Second, we must consider the influence that genomics has on public discussions of gender, race and health. As the environmental Breast Cancer movement struggles to bring awareness to the links of lived environments and disease and the Environmental JusticeMovement Continues its fight to bring awareness to the connection of pollution and Health Disparity what rob nixon is calling slow violence. It racializes these situations. Thank you. Kelly e. Happe is signing books outside after the session. And we will take questions anyone has before that session. And police remember when you have a question go to the microphone in the back of the room. That was a wonderful paper. Very dense. I was really interested in the part of your well the whole paper. But my question is about the part where you talked about the ways that there are difference stories told about africanamerican women who have the brac genes and caucasian white women. But you started talking about the jewish women and i am wondering if you can Say Something about whether ancestry is the main trope because the they are now considered to be white and they were not in the early part of the 20th century. Of samples left over from screening. And that caused a lot of confusion because when those results were published, it was reported and understood to be evidence that jewish women were at a greater risk for Breast Cancer. No, thats not what were saying, were just saying that this particular mutation were seeing in a statistically number of tissue samples. It would be later that they would l do research, you know, connecting the mutations to actual Breast Cancer risk. Jewish religion has long been a risk factor for Breast Cancer. Its not talked about in quite that way anymore, but early literature would risk this particular the jewish religion as a risk factor. So initially when the braca research started, it was seen as evidence for that. And so there was a lot of the language are wasnt quite the wasnt quite the language of ancestry as much as it was ethnicity which led to a lot of confusion in sort of the early years of braca research. More questions . Hi. You this sounds like yet another variation on blame the victim. And so if its the victims fault, you dont really have to do much of anything about it. So i was wondering if you could talk about this from a Health Policy perspective, about right now whats going on in terms of Health Policy in this issue. Okay. Well, what i was initially concerned with was, had been the state of environmental Health Policy, Public Health policy. And my Early Research in breast cappser was looking at cancer was hooking at activism around the environment, particularly in the new york area. And that Early Research theres a lot of activism around, you know, why is it that so many women are being diagnosed with Breast Cancer thats not explained. And if you take all the risk factors that we know about, it still doesnt explain really even half of the Breast Cancer cases. So theres a lot of activism around the country, especially this new york, trying to draw connections between the environment and Breast Cancer rate. And that led to a lot of research in this area. We dont, and so but part of the difficulty is that we tend to not want to really update our environmental regulations in order to make environments safer and to kind of approach Breast Cancer as a Public Health issue as opposed to this medical issue thats really just about a woman and her individual risk that she lives with and negotiates this conversation with her physician in conversation with her physician. And so theres medical policy, and then theres Public Health policy. And the debate seems to be right now about whether Breast Cancer is a Public Health issue or not, what we mean by that. So there are great organizations doing really great work around this area like Breast Cancer action in San Francisco and Breast Cancer fund really trying to demedicallize it in some ways and thinking of it as a problem with the history of the use of toxic chemicals in industry and in agriculture. Thank you, kelly. I want to introduce an idea that i heard at another panel, actually, yesterday. Yesterday we heard alexander stern talk about a book about the history of genetic counseling as a field. And you mentioned the role or the place for genetic counseling with somebody, could i be tested for one of Breast Cancer genes. And i just wonder if you could tell us a little bit more about that part of your research, about the language of genetic counseling there, particularly because what we learned yesterday was that the rush to commercialize these test kits could be such that individuals could take a test to see if they have this gene, and thered be no sort of professional or counseling infrastructure there. So could you speak to that possibility . Yeah. Yeah, the directtoconsumer genetic testing, it seems to be still an industry in flux. But certainly, theres never, weve never had a comprehensive genetic counseling that we need. Usually its only this research settings. And so when researchers want to investigate how these genes work, theyll usually have those sorts of resources on hand. And so with, that was one of the reasons it was problematic that genetic testing was talked about in the way it was this summer with the publicity around Angelina Jolie. Because she was situating herself as a role model, sort of emphatically urging to get, for women to get this test even though, even though theyre not likely to get the kind of yes genetic counseling they would need in order to decide whether they should even undergo the test or not. But there is this sense of this information is knowledge, and its empowering. And, but that all sort of confuses, it doesnt really speak to how difficulty, the decision of how to interpret the information and whether to act on it conclude. And this is one of the reasons i bring up, so youve got what the test tells you in terms of percentage of what kind of risk you have, maybe its 50 , maybe its 80 , and then you have to weigh that against the risks of dealing with surgery, and if its ovary removal, the risks of Heart Disease. And in the end, its really impossible to make a decision. I think in the end its what ones gut tells one to do, what youre living to live with. Maybe you are more afraid of cancer than Heart Disease. That might still be a cultural social phenomenon, but a very real one. And so even the best scenario of genetic counseling, i think, its still a genetic counselor would never be able to completely overcome the problem of how in the world a woman is supposed to decide what sort of risks to live with. Its, it doesnt seem to me particularly empowering at all. The other thing that is misleading, i think, about the way Angelina Jolie was talking about this was she said ive now eliminated my risk for cancer, and i can tell my children i will never get cancer, and i dont know how anyone could say thats true. And so there is you dont get that kind of certainty even if you elect to have these preventive surgeries. Theres actually a lot of debate in the early 90s of whether to commercialize the test. The braca researchers, those Early Researchers just wanted to keep the testing within research settings, but they werent able to control that. And so and now that myriad has lost its patents, it is a lot cheaper now and might very well become more common. Last question