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David Williams: 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 health care, 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 health care in the United States.
One way to look at that is to look at access to health insurance. And if you 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 health care insurance. If you 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, there's
striking 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 socio-economic status, the same stage
and severity of disease. It's quite a pronounced pattern across a broad range of contexts 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 a UCLA medical center, and asked a simple question: When a patient comes in
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 at the job or not, what time they showed up at the ER, how long
did they spend in the ER, but across virtually -- after taking 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 in three large emergency rooms in Atlanta, and found
exactly the same thing looking at black and white patients. An 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 we even have much more scientific data than back
in 2003, documenting it, is a phenomenon that social psychologists have been studying for
50 years. It's called unconscious, unthinking 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 are 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 -- well, the research clearly indicates all of us do this, without our conscious
awareness, it's an automatic 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 actively even know that we are doing it. The typical health care provider
will say, "I would never do this," and persons who believe they would never do it clearly
set up to do it. These are well-established, well-documented, routine processes about how
we all process information.
There's overwhelming scientific evidence in the social sciences that minorities are also
negatively stereotyped 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 showing you the 1990 date. It 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 percent of whites believe
that blacks are lazy, 56 percent that blacks prefer to live off welfare, 51 percent that
blacks are prone to violence, 29 percent that blacks are unintelligent.
Now persons who hold these stereotypes, again, are 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 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 other adjectives in the database. And what they have found, for example, that
when the word "black" occurs in American culture, what most commonly co-occurs 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."
These are just some of the active associations that exist within American culture, and the
point I'm making is that negative racial stereotypes are 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 under some conditions is a wonderful paper by Diana 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 quality
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 accessing 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 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 there are striking 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. They 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 U.S.
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 U.S.-born Latinos, they don't differ
from African-Americans in health. Other research suggests by 21 years in the United States,
the health profile of Latinos -- they've lost the health advantage that Latinos come to
the U.S. 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 example, for American Indians and for African-Americans from birth through
the retirement years. So it's not just one stage of the life course. It is across the
entire life course. These disparities not only exist today, but they are 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 the whites currently have.
Another way of thinking about 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 that whites
had in 1950, and we'll 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, death from diabetes, the dramatic increases in diabetes death rates for American
Indians over time, with the gap being markedly larger today compared to whites than it was
in 1955.
Minorities not only have higher 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 CARDIA
study is a large, multi-site, NIH-funded study of cardiovascular disease; it's 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 used in the concept that researchers are calling allostatic load.
It's looking at systematic, biological disregulation across multiple physiological systems, and
using national data from the United States, these are the mean scores on allostatic load
by age, and you can think of allostatic as a summary measure of biological aging. And
what you can see, if you look at whites from 55 to 64, the health that they have captured
by allostatic load, African-Americans have it 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 does this all have to
do 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. These include changes in gene expression
as well.
As we make sense of these differences, then, we need to think of what are all of these
social exposures that differentially or distinctively affect minority populations. One of them is
low socio-economic status. In the United States, socio-economic status measured by income,
education, occupational status is a stronger predictor of 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 predictor of variations in health. There 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, using 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 on life expectancy at age 25. There's a five-year gap between blacks and whites.
Within the white population, there's a 6.4-year gap by education, making the point I made
earlier, that the gaps within each race by socio-economic status are 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 a persistence of a racial difference,
a 3.1-year gap in life expectancy between black and white high-school dropouts, and
that difference increases as education increases. So it clearly illustrates there are powerful
forces linked to socio-economic status that drives health. There are 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 Howard Medical School, and all white,
graduating from Johns Hopkins, about the same time. They're all medical doctors working
in the United States. They all work under relatively similar conditions. We shouldn't
expect to find racial differences in health among them. But we found that black physicians
have higher risk of cardiovascular disease, have greater incidents of diabetes and hypertension
twice as high, high risk 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 there are racial differences in wealth at every level
of income. And then there's other evidence, such as the persistence of race-related aspects
of life, that I will use the term racism to capture -- 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 U.S. census looking
at wealth, and looking for every dollar of wealth whites have, blacks have nine cents,
and Latinos have 12 cents, and I think this is before the stock market crashed, and the
housing bubble, it's actually worse than it was. If you look at the poorest 20 percent
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
U.S. 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 living.
The added burden of racism: Does it really make sense to talk about racism and its consequences
for health? There's a growing body of research suggesting there are 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. There's striking scientific evidence that comes from audit studies that document
the persistence of discrimination in contemporary society. An audit study's where you hold everything
identical. The only thing you vary is race. So here's the audit study of employment where
black and white males with identical résumés applied for jobs. The only difference was
the race of the person handing in the résumé. They threw a wrinkle into this study by having
one of the white and African-American males say he served an 18-month prison sentence
for *** possession, so he had a criminal record.
The study found what you expect it to find. Whether you're black or white, if you had
a criminal record, you were less likely to get a callback for the job. But a study also
found what we did not expect to find. It was easier for a white male with a criminal record
to get a callback for a job than an African-American male whose record was clean. This study was
replicated in New York City and found exactly the same thing. The white felon gets a higher
callback for jobs than Latinos and African-Americans with an identical résumé 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 PubMed database that
found that 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 this social exposure, this
is the everyday discrimination scale that I've developed. It's a scale that captures
one dimension of discrimination, not the big things but the little things, the little indignities
that occur in the lives of individuals like we see being treated with less courtesy and
less respect than others, receiving poor service, others acting as if they think you are not
smart.
And just to illustrate the power of this risk factor, this is work from Tenny [spelled phonetically]
Lewis. She was at Yale University at the time. These are all published studies using just
the everyday discrimination scale, adjusting for other risk factors for disease, and higher
levels of everyday discrimination predicts higher rates of coronary artery calcification,
predicts higher rates of inflammation as measured by C-reactive protein, higher levels of blood
pressure, lower birth weight among pregnant women, higher levels of cognitive impairment
among the elderly, poorer sleep objectively and subjectively assessed, higher mortality
in a sample of prospective study of the elderly, and higher levels of visceral fat. So across
a broad range of conditions, the stress of discrimination is operating like other chronic
stressors as a predictor 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 of social scientists and public researchers,
a common phrase that they know use is that your zip code is a stronger predictor of your
health in the United States than 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 the 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 from 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 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 worse still having lower rates of
heart disease and mortality than African-American women who are doing the best. And it illustrates
the power of place and race to shape particular outcomes in the United States.
Residential segregation is the driver of these racial differences in outcome. Observers of
American society have said since Myrdal in 1944, that segregation was a key to understanding
outcomes in this country. John Cell, in his tour 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 does segregation have to do with health? Well, 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 there are 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 the segregation in shaping access to educational and socio-economic outcomes
in the United States, David Cutler is a noted economist at Harvard. He did a study, a 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 would completely
erase black/white differences in income, education, and unemployment, and reduce black/white differences
and single motherhoods by thirds. All of that driven by place, and how powerful the location
of place is.
Segregation dramatically, research shows, determines access to high-quality medical
care and multiple dimensions of medical care, and two eminent sociologists William Julius
and Robert Sampson, concluded that in the 171 largest cities, there's not even one city
where whites live under 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
under very different environmental conditions.
This slide shows the level of segregation in South Africa under legally-mandated apartheid,
a segregation score of 90, meaning 90 percent 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 effects do these distinctive residential environments have on normal, physiological
processes. How are 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 their 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 Michael Meaney said it, "Any successful attempt to constructively leverage the remarkable
advances of the genomic era will depend upon our ability to understand genetic influences
and their interactions with the environmental contexts within which they operate." And I'm
saying that when we think of race, we're talking about groups that are living under very, very
different environment contexts.
Future genomic research needs to give increased attention to the comprehensive, detailed,
and rigorous characterization of the risk factors and resources in this psychological,
social, chemical, and physical environment that may interact with the genetic factors
to affect health rates. Much of the research to date on race and genetics has emphasized
gene frequency differences over gene expression differences. Given the racial and socio-economical
differences in residential and occupational environments, more systematic attention should
be given to the understanding of the contribution of epigenetics to disease risk, and to racial
disparities and socio-economic disparities in health. There are suggestions in the literature
that there might be striking epigenetic effects linked to harsh environmental exposures, particularly
epigenetic effects linked to the immune system, for example.
These are just suggestions. I think what we need is more systematic effort to deeply understand
these patterns that are emerging. What I'm saying is we need a more integrated science
to better elucidate how an individual's zip code interacts with their genetic code to
affect health rates; 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 contributing to health
disparity, so the genetics alone doesn't hold the 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 risks and exposures. We need, I think, a trans-NIH, a number of
trans-NIH initiatives to develop proved 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
essential to understanding the role of genomics in disease. We need better integration of
social environmental exposures with innate and acquired biological factors. Fourth, conclusions
about the contributions of genetics to be based on direct test of genetic traits, and
that sounds like common sense, but if you read medical literature, that's not what is
still happening today. Fifth, research on race and genetics should exercise caution
in making generalizations and inferences to entire racial populations when coverage of
the diverse ancestral groups is limited. Sixth, given the distinctive environments of racial
minorities in the United States, more systematic attention should be given to identifying 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.
[applause]
Eric Green: We have time for a quick question if someone
can head to a microphone.
Female Speaker: I have a question. Did you try to look at
the racial population of the health care providers? Like, I would imagine because, like, doctors
maybe are 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...
David Williams: Yes. I'm assuming that you're referring to
the work that the IOM Committee's "Unequal Treatment" report of to what extent the patterns
of disparities and 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. There was one published study, and when you looked at
it carefully, we wondered how it became a published study --
[laughter]
-- given its conclusion. You know, it used the race of the provider on record in an academic
medical center, who was not necessarily the provider who actively provided care to the
individual. It was 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 exist across races. Whites are more likely
to have it than African-Americans, but many African-American providers also have implicit
biases among blacks. After all, they are a 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 inculcated from their larger culture.
Female Speaker: Yes. 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.
David Williams: Let me just use this opportunity to emphasize
the fact that I illustrated the impact that this implicit bias has had 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 old people, similar processes will operate,
and where societies differ is what are social outgroups that are focused on a particular
society, and what has been the history of that particular society. Thank you very much.
[applause]
Eric Green: Thank you, David. As you can see from the
last two speakers, there is a very rich set of issues and important issues around genomics
and society, and so the next video we'll watch before the lunch break is about Genomics and
Society: A Historical View.