 It's really good for me to be here as part of this really important celebration of the human genome project and to talk a little bit about the challenges and opportunities in the face of very striking disparities in the United States in both access and utilization of healthcare as well as in health status. So I want to highlight some of the key features of the patterns of disparities and then I want you to think with me about what this all means and what are the opportunities for the human genome project. So there are large racial ethnic disparities in access to healthcare in the United States. One way to look at that is to look at access to health insurance and if we look at the percentage of Americans by race ethnicity who have access to any kind of health insurance you can see that some populations particularly Latinos and Native Americans have relatively low access to healthcare insurance. If we look at those who have access to public insurance which is some insurance coverage but doesn't provide as much benefit again you see some minority populations Latinos, American Indians and African Americans particularly having high levels of access to public health insurance. Another way to think about access to care that is used by health service utilization researchers is to ask people if they had had a time in the past year when they needed medical care but did not get it for some reason. And again if you look at those who report that they needed medical care but were unable to obtain it for some reason you see minorities again overrepresented particularly among the Asian Pacific Islander population and the African American population. In addition to these markers of access to care they strike in evidence of racial ethnic disparities in the quality and intensity of health care in the United States. The 2003 report from the Institute of Medicine entitled Unequal Treatment documented that across virtually every medical intervention from the most simple medical procedures to the most high tech procedures minorities receive fewer procedures and poorer quality medical care than whites. These differences persist even when you look at persons with the same level of health insurance the same level of socioeconomic status with the same stage in severity of disease it's quite a pronounced pattern across a broad range of context within the American health care system. Just to give you an example of what we mean in terms of racial ethnic disparities in care I'll focus on one study the IOM committee reviewed over 200 peer reviewed publications that documented these disparities. But think of Dr. Todd, Knox Todd, an emergency room physician at the UCLA medical center and asked a simple question when a patient comes into the UCLA emergency room with a long bone fracture a broken bone in the arm or legs does that patient's ethnicity predict whether that patient gets pain medication or not and he found that over the prior year 55 percent of Latino patients with a long bone fracture had received no pain medication compared to 26 percent of non Hispanic whites. Dr. Todd was a good researcher he worried about confounding and he statistically adjusted for the age of the patient whether they spoke English or not whether they had insurance or not whether they got injured on a job or not what time they showed up at the ER how long that is they spent in the ER but across virtually after taken into account all of these potential factors Latino ethnicity emerged as the single strongest predictor of whether the patient would get pain medication or not. Dr. Todd moved from UCLA to Emory University in Atlanta repeated the same study of three large emergency rooms in Atlanta and found exactly the same thing looking at black and white patients and African American with a long bone fracture goes to the emergency room in Atlanta is less likely to receive pain medication compared to a white patient and so this leaves us with this core paradox that we need to understand how is it possible in a country with the best trained medical workforce in the world with providers who wake up every day meaning to do their best for their patients can still produce a pattern of care that appears to be so discriminatory. One of the answers for this that the IOM committee identified for which we now even have much more scientific data than back in 2003 document in it is a phenomenon that social psychologists have been studying for 50 years it's called unconscious on thinking discrimination based on negative stereotypes it's not about race it's not about American society it's about how human beings process information we put things into categories to simplify the complex cognitive information we bombarded with each day the question is based on our socialization and based on our society do we hold negative implicit attitudes about some of those categories and if we do what the research clearly indicates all of us do this without our conscious awareness it's an automatic watching process there's no intent we will treat persons in that category that we hold negative stereotypes about differently that is we will discriminate against them but we wouldn't actually even know that we are doing it the typical health care provider would say I would never do this and persons who believe they would never do it's a personal perp clearly set up to do it the this is well established well documented routine processes but how we all process information this overwhelming scientific evidence in the social sciences that minorities are also negatively stereotypes in the United States with African-Americans being more stereotyped than any other group this is national data for the United States from the general social survey done by the University of Chicago in 1990 I'm sure in 1990 dated has multiple stereotypes they've been tracking two stereotypes since then and the patterns have not changed dramatically since 1990 but you see that 44% of whites believe that blacks are lazy 56% of blacks prefer to live off welfare 51% of blacks are prone to violence 29% that blacks are unintelligent now persons who hold these stereotypes again and not bad people there's a lot of research to suggest that this is what American culture has taught them one illustration of that is from a project called the Beagle project where a group of psychologists have put American culture and that is the books newspapers magazine articles that the average college educated American would read in their lifetime have put it in one database and if you have American culture in a database you can then look at associations between particular words in that database with with other adjectives in the database and what they've found for example that when the word black occurs in American culture what most commonly co-occurred with it is poor then violent then religious then lazy then cheerful then dangerous so several of the stereotypes I just showed you from the general social survey are in fact the associations that normally occur within American culture for the fun of it when white occurs wealthy progressive conventional stubborn successful educated when female occurs distant warm gentle passive male dominant leader logical strong he said just some of the actual associations that exist within American culture and the point I'm making is a negative racial stereotypes what people in fact have been fed the good news is research suggests that these stereotypes can be reduced and the tendency to socially categorize onto some conditions is a wonderful paper by Dana Burgess and colleagues that illustrates that in the interest of time I will not discuss that but what are the implications of these racial ethnic disparities in access to care and equality of care it means that we shouldn't assume that the existence of breakthroughs in genomic medicine will reach all populations and we need to ensure equitable access to genomic medicine of all populations in the United States multiple barriers to access in all the benefits of genomic medicine needs to be effectively addressed we need to identify all of them and effectively address them we need to make systematic efforts to build trust and partnerships with historically marginalized populations who already approach a medical encounter with with reservations often public outreach programs can enhance understanding and awareness of genomics and we need them we need to strengthen the genomic education of health care providers and we need to enhance science literacy at all educational levels in the United States so there's a broader appreciation on the part of all of the potential of genomic medicines I also want to talk about the fact that they're striking racial exit this but racial ethnic disparities not only in access and utilization of care but in the distribution of health problems in the first place if you look at national data for the United States you see two major patterns in the data there are groups that have had a long history of economic exploitation social marginalization and geographic isolation have markedly elevated rates of poor health outcomes and that's true for blacks or African Americans for American Indians and Alaska natives and for native Hawaiians and other Pacific Islanders these groups have worse health than the US average immigrant populations like Asians and Latinos tend to have better health but that health advantage declines rapidly over time with some recent data finding that although Latinos as a whole seem to do better if you look at the US born Latinos that don't differ from African Americans in health other research suggests by 21 years in the United States the health profile of Latinos and they've lost the health advantage that Latinos come to the US with the patterns of disparities in health exist across a broad range of medical conditions and exist across the entire life course so you see higher age specific death rates for example for American Indians and for African Americans from birth to the retirement years so it's not at one stage of the life course it is across the entire life course these disparities not only exist today but they're quite persistent over time if we use life expectancy at birth as an indicator of that you can see in 1950 there was an eight year gap between blacks and whites in life expectancy the good news is it's smaller today but there's a five-year gap in 2006 which is still substantial given that life expectancy increases nationally overall by about two tenths of one year from one year to the next if we froze the life expectancy of whites it would take African Americans about 25 to 30 years to catch up to the health that whites currently have another way of thinking of that is we can look at the life expectancy of whites in 1950 and ask how long did it take for African Americans to catch up to the life expectancy the whites had in 1950 and we'd see it was 40 years later in 1990 so there's a 40 year gap 30 to 40 year gap in all of the comparisons here between two populations living in the same society American Indians served by the Indian Health Services one group we have data on over time the Indian Health Service started in 1955 and you can see for this health outcome that's from diabetes the dramatic increases in diabetes death rates for American Indians over time with a gap being markedly larger today compared to whites than it was in 1955 minorities not only have high rates of disease they get sick at younger ages they have more severe illness and they die sooner than whites I'll give you two snapshots of this the cardiac study is a large multi-site NIH funded study of cardiovascular disease and been following young adults now for 25 years a 20 year follow-up study found that incident heart failure under the age of 50 was 20 times more common among African Americans compared to whites another indicator of this is using a concept that researchers are calling allostatic load is looking at systematic biological dysregulation across multiple physiological systems and using national data for the United States these are the means cause an allostatic load by age and you can think of allostatic loges as some remeasure of biological age in and what you can see if you look at whites at 55 to 64 the health that they have captured by by allostatic load African Americans have a 10 years earlier so there's a 10 year gap between blacks and whites biologically in terms of their overall health status how do we make sense of these racial ethnic differences and what what does this all have to do with with genomics I think we need to remember that race reflects simultaneous unmeasured confounding for both genetic factors and environmental exposures race reflects unmeasured confounding due to the current social environment but also to exposures over the entire life course and to biological adaptation to these environmental exposures this includes changes in gene expression as well as we make sense of these differences then we need to think of what all of these social exposures that that differentially or distinctively affect minority populations one of them is low socioeconomic status in the United States socioeconomic status measured by income education occupational status is a stronger predictive variations in health than race ethnicity most people we focus our health care systems historically have focused on race ethnicity but SES is a larger predictive variations in health here is national data for the United States looking at premature mortality that is death before the age of 65 by income level and it indicates that low income Americans are three times more likely to die before the age of 65 compared to high income Americans but what we also know use in national data is that the health disadvantage of minorities is not simply a matter of lower income and education minorities have elevated levels of illness even at comparable levels of education and income let me illustrate that with national data in life expectancy at age 25 there's a five year gap between blacks and whites within the white population is a 6.4 year gap by education making the point I made earlier that the gaps within each race by socioeconomic status a larger than the racial gap within African Americans a 5.3 year gap by levels of education but this is the problem at every level of education there's still the persistence of a racial difference 3.1 year gap in life expectancy between black and white high school drivers and that difference increases as education increases so it clearly illustrates their powerful forces linked to socioeconomic status that drives health their powerful forces linked to race as well that also drives health just to give you another illustration of this persistence of the racial gap is a study of a cohort of physicians all black graduating from the harry medical school and all white graduated from johns hopkins about the same time the all medical doctors working in the united states they all work on the relatively similar conditions we shouldn't expect to find racial differences in health among them but we found that the black physicians have high rates of cardiovascular disease have incidence rates of diabetes and hypertension twice as high high rates of coronary artery disease and once they get sick they're much more likely to die compared to the white physicians why does race still matter so much genetics could be one part of it there's also research though that indicates that there are social factors that seem to play a role one of them is capturing exposures over the life course and thinking not only about current levels of education but what has been your exposure to social adversity over your entire life another is that all of the indicators of income education occupational status don't mean the same thing in each racial group there are racial differences for example in income at every level of education and their racial differences in wealth at every level of income and then there's other evidence suggesting the persistence of race related aspects of life that have a user term racism to capture that that captures additional pathogenic factors that have health consequences so this is data for example from the united states nationally that shows that compared to whites blacks and hispanics receive less income at the same level of education have less wealth at equivalent levels of income have less purchasing power which means the cost of goods and services are more expensive in the places where they live so their dollars don't stretch as far one of the distinctive social exposures then is that the minority poor are poorer than the white poor I'm illustrating that with data from the US census looking at wealth and looking for every dollar of wealth whites have blacks have nine cents and Latinos have 12 cents and actually this is before the stock market crashed and housing bubble it's actually worse than it was if we look at the poorest 20% of the US population for every dollar of wealth poor whites have poor blacks have one penny and poor Latinos have two pennies and even among the richest quintile of the US population for every dollar of wealth rich whites have rich african-americans have 31 cents and rich latinos have 35 cents so you see the persistence of differences in economic status even when we look at similar patterns of income the added burden of racism does it really make sense to talk about racism and its consequences for health this a growing body of research suggesting their multiple mechanisms by which institutional mechanisms of racism and interpersonal dimensions of racism affect health in the interest of time I will talk about two of them one is perceived discrimination and the consequences it has for health and is a risk factor for health this striking scientific evidence that comes from audit studies that document the persistence of discrimination in contemporary society and audit studies are study where you hold everything identical the only thing you vary is race so here's the audit study of employment where blacks black and white males with identical resumes applied for jobs the only difference was the race of the person handed in the resume they threw a wrinkle into this study by having one of the white and african-american males said he'd served an 18 month prison sentence for cocaine possession so he had a criminal record what you did study found what you expected to find whether you were black or white if you had a criminal record you were less likely to get a callback for a job but the study also found what we did not expect to find it was easier for white male with a criminal record to get a callback for a job than an african-american male whose record was clean the study was replicated in New York city and found exactly the same thing the white felon gets high callback for jobs than latinos and african-americans with an identical resume and a clean record does this discrimination have any consequences for health this is a review paper we did recently looking at over 109 studies in the last three years in the pub med database that found the discrimination perceived discrimination predicts the risk of disease predicts substance use and health behaviors predicts the incidence of disease and predicts the ways in which minorities seek health care to give you a concrete sense of the social exposure this is the everyday discrimination scale that I developed it's a scale that captures one dimension of this of discrimination not the big things but the little things the little indignities that occur in the lives of individuals like received being treated with less courtesy and less respect than others receiving poor service others acting as if you think you are not smart and just to illustrate the power of this risk factor this is work from tennie louis which was at the university at the time these are all published studies using just the everyday discrimination scale adjusting for other risk factors for disease and high levels of everyday discrimination predicts higher rates of coronary artery classification predicts higher rates of inflammation as measured by C reactive protein high levels of blood pressure lower birth weight among pregnant women higher levels of cognitive impairment among the elderly poor asleep objectively and subjectively assess higher mortality in a sample of prospective study of the elderly and high levels of visual fat so across a broad range of conditions the stress of discrimination is operating like other chronic stressors in predicting poorer health for minorities another dimension of discrimination I want to talk about briefly is place you might be surprised to know that but among social scientists and public health researchers a common phrase that they now use is that your zip code is a stronger predictor of your health in the United States in your genetic code because there's such a powerful relationship between place and health let me illustrate that with data from CDC Mississippi stands out as a state with the highest rates of heart disease mortality in the United States of any state whites in Mississippi have the highest rates for whites nationally African Americans in Mississippi have the highest rates for African Americans nationally and this is by county in Mississippi and showing the rates by quintiles of heart disease this is it for African Americans and I'll put the two distributions together and what you find in the state with the worst outcomes nationally there is no overlap in the distribution with the whites who are doing the worst still having lower rates of heart disease mortality than African American women who are doing the best and it illustrates that the power of place and race to shape particular outcomes in the United States residential segregation is a driver of these racial differences in outcome observers of American society have said since murder in 1944 that segregation was a key to understanding outcomes in this country John Seller historian at Duke University wrote a book on the origins of segregation where he argued that residential segregation by race was one of the single most successful domestic policies of the 20th century in the United States because it's beneath the radar screen of most individuals but it's a powerful predictor of outcomes and access to opportunity and resources in American society what is segregation have to do with health will the research suggests that segregation determines your access to education and quality of education your access to employment opportunities where you live determines the quality of neighborhood environments the quality of housing environments it determines whether it's easy or not to eat a healthy diet to get a regular exercise it determines your access to quality medical care basically what I'm saying is the research suggests that segregated communities are unhealthy communities and their multiple social chemical physical dimensions on which communities vary in being healthy and on all of these dimensions segregated communities tend to be more unhealthy communities how powerful is segregation in shaping access to educational and socioeconomic outcomes in the United States David Cutler is a noted economist at Harvard he did a study national study for the United States looking at black and white young people making it economically and he concluded that if you could in fancy economic models I cannot even fully describe if you could eliminate statistically segregation in the United States you completely erase black-white differences in income education and unemployment and reduce black-white differences in single motherhoods by two-thirds all of that driven by place and how powerful the location of places segregation dramatically research shows determines access to high quality medical care on multiple dimensions of medical care and two eminent sociologists Williams Lewis Wilson and Robert Samson concluded that in the 171 largest cities there's not even one city where whites live on the similar conditions to African-Americans and concluded that the worst urban context in which whites reside is considerably better than the average context of black communities so when we talk about race then we're talking about groups living on the very different environmental conditions this slide shows the level of segregation in South Africa on the legally mandated apartheid a segregation score of 90 meant that 90% of black South Africans would have to move to have an even distribution of blacks and whites in that country in the 2000 census most of America's largest cities have a level of segregation only slightly lower than that on the legally mandated apartheid in South Africa what does this all mean for the human genome project we really need to think more carefully about what affects to these distinctive residential environments have a normal physiological processes how a normal adaptive and regulatory systems affected by the harsh residential environments of minorities in the United States and to what extent does minorities biological adaptation to the residential environments lead to some biological profiles that are different from other groups and to some distinctive patterns of interaction between biological and social exposures as a Michael Meany said it any successful attempt to constructively leverage remarkable advances of the genomic era will depend upon our ability to understand genetic influences and their interactions with the environmental context with which they operate and I'm saying that when we think of race we talking about groups that are living on the very very different environmental context future genomic research needs to give increased attention to the comprehensive detailed and rigorous characterization of the risk factors and resources in the psychological social chemical and physical environment that may interact with the genetic factors to affect health race much of the research to date on race and genetics has emphasized gene frequency differences over gene expression differences given that racial and socioeconomic differences in residential and occupational environments most systematic attention should be given to the understanding of the contribution of epigenetics to disease risk and to racial disparities and socioeconomic disparities in health there are suggestions in the literature that they might be striking epigenetic effects linked to to harsh environmental exposures particularly epigenetic effects linked to the immune system for example these are just suggestions I think what we what we need is more systematic effort to deeply understand these patterns that emerging what I'm saying is we need a more integrated science to better elucidate how an individual zip code interacts with their genetic code to affect health risk how the multiple dimensions of the social physical environment combine additively or interactively with each other and with innate and acquired biological factors and accumulate over the life course to affect the onset of illness and the progression of disease so my concluding thoughts there are many non-genetic factors contribute to health disparities so genetics alone doesn't hold a solution but I think it's an important piece of the puzzle that we want to maximize fully the benefits racial groups differ on a broad range of environmental risk and exposures we need I think a trans NIH a number of trans NIH initiatives to develop improved definitions and measurement of the social environment in all of its complexity I think we are not at the stage now where geneticists can work with a social genome that is explicitly characterized third gene environmental interactions are central to understanding the role of genomics and disease we need better integration of social environmental exposures with innate and acquired biological factors fourth conclusions about the contribution of genetics should be based on direct test of genetic traits and that sounds like common sense but if you read a medical literature that's not what is still happening today fifth research on race and genetics should exercise caution in making generalizations inferences to entire racial populations when coverage of the diverse and sexual groups is limited six given the distinctive environments of racial minorities in the United States more systematic attention should be given to identify and understanding potential epigenetic effects and finally more attention needs to be given now to ensure that the full potential of genomics becomes accessible to all I believe this will require reforming current infrastructures within our health care system and developing best practices that can be routinely applied within the health care context thank you very much we have time for a quick question if someone can head to a microphone I have a question did you try to look at the the racial population of the health care providers like I would imagine because like doctors maybe or more white and it's just this unconscious need to help people similar to themselves so you had a comparison of the white doctors versus black doctors but the people who treated them you know yes I'm assuming you're referring to the work that the IOM's committees on equal treatment report of to what extent did the patterns of disparities in the quality of intensity of care exist when the provider was in fact African American compared to when the provider was white we were very interested in that issue there just wasn't research it was one published study and when you looked at it carefully we wondered how it became a published study given this conclusions you know it used it used the the race of the provider on record in a in an academic medical center who was not necessarily the provider who actually provided care to the individual it was a looking at patient records so I would say since then there is a body of literature that has looked at that and have used some of them have used vignettes and have looked at the race of the provider and find that the processes of implicit bias exists across races whites are more likely to have it in African Americans but many African American providers also have implicit biases among blacks after all they are part of American society they have been fed the same levels of stereotypes so it exists to some extent to a lesser extent but it also exists among providers it's really not about the provider race it's about what the provider has has inculcated from the larger culture I just want to add a comment this is very similar to the prejudice against scientists like female minority scientists they find that even in well the idea is to increase the number of females in all settings at the higher levels especially but even at the higher levels women are prejudiced against women scientists unconsciously you know let me just use this opportunity to emphasize the fact that I illustrated the impact that this implicit biases have for race but it's really not just about race it's about any social category so if you have implicit biases against gay people against fat people against all people similar processes will operate and where societies differ is what the social outgroups that are focused on in a particular society and what has been the history of that particular society thank you very much thank you David as you can see from the last two speakers there is a very rich a set of issues and important issues around genomics and society and so the next video will watch before the lunch break is about genomics and society a historical view