WITH PILAR OSSORIO
Pilar Ossorio is a legal scholar, microbiologist and bioethicist
who teaches at the University of Wisconsin - Madison. She is a
leading expert on the ethical implications of genetic research.
What is race?
In our popular conceptions,
we have a notion of race as being sort of simple divisions of
people - divisions among people that are deep, that are essential,
that are somehow biological or even genetic, and that are unchanging,
that these are clear-cut, distinct categories of people. And that
is not the case. All of our genetics is telling us that that's
not the case. We can't find any genetic markers that are in everybody
of a particular race, and in nobody of some other race.
I would never say that race doesn't exist. One of the things we're
hearing now is that the human genome project is somehow showing
us that race doesn't exist. Well, what it's showing us is that
the simple biological notion of race is wrong.
But just because
race isn't something biological, that doesn't mean it's not real.
There are a lot of things in our society that are real and are
not biological. I think we would say marriage is something that's
real. It's real because we have laws that we follow. We have social
traditions that we follow. And those things are real. And race
is real in that same sense. It's real in the sense that we create
it in our relations between people. We treat people a certain
way based on what race we believe them to be. Race, as we understand
it as a social construct, has a lot to do with where somebody
will live, what schools they will go to, what jobs they will get,
whether or not they will have health insurance.
So race does
play a very important role in our lives, and I think race is real
as a social construct. It's not real as a biologically definable
thing. But it's no less important because it's a social construct.
It's still, in this country at least, it's a very significant
social stratifying practice…And similarly, there is a way in which,
regardless of genetics, we live in a social world in which we
ascribe races to people, and we have race as part of our personal
identity, and that's still very important for the world in which
What makes us different one from another?
take the standard racial categories, and we ask: Are the people
whom we call black more like each other than they are like people
who we call white, genetically speaking, the answer is no. There
is as much or more diversity and genetic difference within any
"racial" group as there is between people of different racial
groups. We also know that any two people will have a genetic difference
between them approximately one time in every thousand DNA bases.
So if you were just going along through the genome, base by base
by base, in my genome and a friend of mine's genome, approximately
once every 1,000 bases there would be a difference between us.
If then we looked at my genome compared to some colleague of mine,
a different friend, there would also be a difference between us
once every thousand places, but it might be a different place.
So people, we say, are about 99.9% genetically similar to each
Now, of course, when we study genetics, we're as interested
in the differences as we are in the similarities. Of course, the
.1 percent is - those are the genetic differences that make us
unique from each other, genetically speaking. Those certainly
aren't the differences that make us different as people, in the
sense of, there is so much more than your genetics that makes
you who you are. And right now in our society, there is a tremendous
focus on genetics, and tremendous interest in genetics, but at
the same time, we're sort of forgetting that there is biological
development. There's psychological development. There are all
of these other things that go into making a personality, even
making the person's physiology. So what makes us different is
both those genetic differences that we have between us, and also
the interaction of that genome with the environment.
environment is a very, very complicated thing. So I sort of mean
the environment writ large, everything from the environment in
the womb to the environment in your school, toxins that you may
be exposed to at various points in your life, in your development,
and so forth and so on. There are many, many things that go into
making us different from each other. One of those things happens
to be the genetic differences between us.
There's another point
that I think needs to be made: We tend to collapse or elide genetics
and biology. But those are not the same thing. Genetics is a subset
of biology, but biology is something much bigger. The relationship
between genetics and biology is a complicated relationship. What
you are biologically is only in part determined or influenced
by your genetics. It's influenced by all kinds of other things
as well, including what you eat, what your stress levels are,
all kinds of other things. People forget that. We tend to talk
about our genetic and biological make-up as though they're the
same thing, and they're not. There's a lot more to biology than
The contingency of race
Race is also, to use
the jargon, geographically and historically contingent. What do
we mean by that? Well, I have a friend who's from the Bahamas;
he grew up there. And he was white in the Bahamas. So he lived
his life socially positioned as a white person. He came to the
United States and instantly he became a black person. Because
our understanding here of what it means to be white and black
is different than the understanding of people in the Bahamas.
So what we see and label as black is different than what other
people see and label as black.
How a society constructs or understands
race varies across societies, and even across parts of one society.
There are a lot of things that go into ascribing race to a person.
It's not just looks. It's not just physiognomy. It's also how
they speak. Do they speak with an accent or not? Do they speak
a certain style of English, or a different style of English, for
instance? What religion are they, may have something to do with
how we ascribe race to them.
So when we say race is geographically
contingent, it means you can move from one part of the country,
or one part of the world to another, and you can actually change
Likewise, we know that there is a certain percentage of
people who are born one race, and die another race. And this is
partly because there are different rules for how people's race
is ascribed on their birth certificate from their death certificate.
For a while, if any parent was black, then the child was labeled
black. Sometimes it was just what the delivering physician thinks.
Now I think in many states the rule is, the race of the mother
as she reports it is the race that the child will be labeled on
their birth certificate. On the other hand, very often when people
die, the race that goes on their death certificates is whatever
the coroner or officials ascribe to that person. Since obviously
you're dead, you don't get to say what race you are when you die.
And so there are a few percent of people who are born one race
and die another race.
And historically, in order to be a naturalized
citizen in this country, as an immigrant, you had to be categorized
as white or black. And almost everybody who tried to naturalize
- all but, I think, one case that went to the Supreme Court -
all of them were people trying to be categorized as white. So
the courts had to make decisions about who was white and who was
not. Is an Armenian person white? There were a number of cases
dealing with Asian people, and are they white or not white. And
so one of the things that would happen is the person would come
into court and say, "Look, my skin color is as white as anybody
else's skin color in here who is categorized as white."
it's very interesting to read these decisions and opinions, and
have the court say, "Race is not only about the color of your
skin. It's about other things too, like your attitudes about family,
your attitudes about politics." The court often decided who was
white and who wasn't based on whether they felt that the person
would politically fit well into the kind of society we were trying
to build. And sometimes it was pretty explicit that this was what
the court was doing. And I don't think the court is different
from other people in our society, even today, that we understand
race in a very complex way that takes into account all of these
other aspects of a person besides simply their skin color, or
whether their nose is flat or narrow, or the shape of their eyes
and how almond shaped they are.
Should race be used as a category in biological research?
I think as scientists we are
still pretty confused about race, and what relevance race has
to the things that we study, and whether or not race is a biological
category. In part that's because scientists are human beings who
have been socialized in this same society.
I think it's too
simplistic to say that we should throw out the concept of race
when we're doing science, because although race is not genetically
definable, race is still, because of its social power, it still
influences us in ways that may influence our health. So whether
you live near a toxic waste dump of some sort, that's correlated
with what race you are. Whether or not you have health insurance
is also correlated with what race you are. And so there are many
things in this society that are correlated with race that may
influence our health. So I think it's too simplistic to say that
we should just never use race as an analytical variable when we're
doing science, because there are important things that we could
learn, and that we should learn.
But the problem is that we
shouldn't always assume that if we see racial disparities or differences,
that those are due to genetic causes, as opposed to some other
kind of cause.
I personally think that, usually, if we want
to understand something about inheritance, we probably ought to
be using categories that are much narrower and more clearly defined
than race. We know, for instance, that on the continent of Africa,
there is a lot of genetic diversity there. And so trying to understand
something about ancestry, back to particular parts of Africa,
might be very interesting. But if it is, then categorizing by
"black" is not going to be a very helpful categorization.
likewise, what does the category white mean? If you want to understand
something about somebody's ancestry, and whether their ancestry
goes back to northern Europe, or whether they have Celtic ancestry,
and their ancestry goes back to the British isles, that might
be much more important than the category "white." This is almost
a non-category, as is the category black. The people who are captured
within those categories are so genetically and biologically diverse,
and their ancestries might be very, very different. There could
be people in this country who are black, who might now be categorized
as African American, whose ancestry actually is Australian indigenous.
Very, very different ancestry. Yet, if we look at them, we might
categorize them as black, the same way we might categorize somebody
whose family is recently from Africa as black.
A lot of times
when we're doing the science, we're not extremely careful about
the descriptions of the populations that we're using, and so we
will use 1,000 white people, people whose samples are gathered
from various different points in the United States, for instance.
But the ancestry of those people may be quite diverse. And then
we will compare that to 100 or 50 samples of perhaps people from
one town or small village from Africa. And then we will use the
African sample to stand for "black people" and the sample of 1,000
white people from across the United States to stand for "white
people." And you're comparing two quite different things when
you make such a comparison, because you're comparing one group
of people who may be fairly closely related to each other biologically,
to another group of people whose ancestry goes all over the world.
so it's not clear to me, necessarily, what the validity of those
comparisons is. But however we can legitimately use those data,
I think it's really important that we're very clear about who
those data derive from. That one town in Africa should not necessarily
represent all of Africa, or all black people, any more than northern
Wisconsin should represent all white people. And we have a lot
of confusion about that, and it's problematic for a lot of reasons.
But one reason is because of how race and racism work. And one
of the things that happens is that the less socially powerful
group is perceived as being more homogeneous in general, as being
less complex, less in need of individual attention, in some ways.
And I think we play into that with the science when we use just
a very small sample of African people, or African Americans, to
stand for a whole "race" of people.
It's critical that we use
terminology carefully and thoughtfully. If we don't, we confuse
ourselves. We often use terminology, I think, in a somewhat sloppy
way, and we actually use racial categorizations for people when
we really are looking at something that is not race, but something
much more geographically defined, much smaller, and more concise,
if you will, than race…
And part of the problem with using race
terminology when we really don't mean that is that we can reify
the notion of race. And by reify I mean, take something that's
an abstract notion and make it seem physically real. And that,
I think, is very dangerous in the sense that, at the same time
that the science is suggesting that these common-sense notions
of separate, deep human racial categories are not really accurate
or true, if we use racial terminology loosely and inappropriately
we can reinforce people's notions that these racial categories
are genetically real.
What do we make of newspaper stories about genetic differences
We often see reported
stories about genetic differences between groups of people. Now,
what does that really mean? Usually it doesn't mean that in a
certain group there's a version of a gene that's just absent completely
from another group. That does occasionally happen, but it's very
rare. Usually what it means is that, say there's one gene that
has two different versions, or two "alleles." And in one group
there might be 40% of allele A, and 60% of allele B. In another
group, it might be 60% A, and 40% B. Those are statistically significant
differences, but it doesn't mean that you could look at somebody
from the first group and say, "I know that they have allele B,"
and somebody from the second group, you could look at them and
say, "I know they have allele A." You can't do that based on these
statistically significant group differences.
The other thing
we need to think about is, the statistics change depending on
the denominator. So how you draw the circle around the population,
or each of those populations, could change the number that you
get. So 40% A, 60% B, if you defined the population differently,
you might get 45% A and 55% B. So those numbers, they're things
that you can find. They're real data. They're statistically significant.
But we have to be careful of attributing perhaps too much real
world, concrete meaning to those numbers, or thinking that those
numbers are going to be true for all times and all places and
all people. Those numbers are true based on this statistical sampling
in the population as you have defined and described it.
Pharmacogenomics: Why are drug companies doing population
all interested in understanding why a drug is effective in some
people and not others. Why do people respond differently to different
doses? Some people might need a large dose of a drug. Some people
might need only a small dose for it to be effective. Another thing
that pharmaceutical companies, and others, are very interested
in, is why do just some small proportion of people have a really
bad side effect in response to a certain drug?
It has turned
out though, that people who are studying what we call pharmacogenomics
- i.e., the way genetic factors influence our responses to drugs
- people who are studying pharmacogenomics are very interested
in racial group differences in responses to drugs. And it's not
really clear to me why they are.
Supposing you find that among
those people that in this country we define as African American,
that you have 40% A and 60% B, and B is an allele that helps you
respond well to a certain drug, whereas maybe among white people
in this country, however so defined, you have 60% A and only 40%
B. Why would this matter to a pharmaceutical company?
of the reason it might matter is that they have to run all kinds
of drug trials, all kinds of studies or research and experiments
before they can get a drug to market. And if you can define a
group of people who are more likely to be good responders to your
drug, it may be that you can run fewer trials - that you need
fewer people to get statistically significant results. You might
be able to run faster drug trials. So there are reasons why pharmaceutical
companies would like to know, as early as possible, who is likely
to be a good responder to a drug. And those are legitimate reasons.
On the other hand, is this going to mean that once the drug
is approved, it gets approved only for a specific population,
one racial group of people? That's a lot more problematic, particularly
if you've got the kind of difference that we often see, where
there's a statistically significant difference in allele frequency,
So say you find one of those differences. If a drug
was only approved for use in one population of people, not everybody
in that population is going to be a good responder to that drug.
And not everybody in the other population would not respond to
the drug. And so it's not clear to me that it would be really
appropriate to say, "This is a drug for white people," or "This
is a drug for black people," at least not based on genetics.
in fact, we know there are a lot of nongenetic factors that can
play into how people respond to drugs. Things in your diet can
cause an enzyme in your body, which may metabolize the drug. Your
diet can up-regulate an enzyme, cause your body to make more of
it. Your diet can also inhibit an enzyme, cause it not to work
as effectively. Those are things that can influence responses
to drugs at the biological level, in measurable ways that may
or may not map onto culture, more so than race. And those are
biological responses. But they're not genetic responses.
the differences we see in the way people respond to a drug - whether
or not they have a side effect, how much of the drug is required
before the drug is effective - these could be differences that
have nothing to do with genetics, but may still relate to things
like race or culture.
Genetic determinism - Correlation vs. causality
Looking for genes associated with any kind of trait
is a really sort of sexy thing right now in science, and in the
popular imagination of science. So there are all kinds of genes
that people are trying to look for, genes that have to do with
behaviors as well as genes that have to do with diseases, or genes
that have to do with personality traits.
One of the problems
with this kind of work is that it's easy to infer certain kinds
of causality. If you find a relationship, a correlation, between
a certain version of a gene and a behavior or a personality trait,
it's very interesting to infer some strong genetic causality,
which may be very inaccurate. And so some person could say, "Look,
there must be a gene for incarceration." Well, you might find
some gene associated with skin color that is also associated with
likelihood of being incarcerated because we happen to be incarcerating
a very high percentage of people of color in this country right
now. So you might find some melanin gene associated with incarceration.
does this mean that somehow this bit of DNA makes you march right
over to jails and pop yourself in? No. It means that a certain
degree of melanin in your skin, in this society, puts you in a
certain place socially where you are more likely to be arrested,
more likely to be convicted, more likely to have a long sentence.
It's mediated through the social relations, not that there is
an inevitable connection between this gene and incarceration.
one of the fears is that if we think of genetics as being determinative
in some sort of very fundamental way, where we have this sense
of inevitability, that if something is genetic, then it's sort
of unchangeable, that let's society off the hook. And even for
basic biological traits, that's not necessarily the case at all.
But certainly for these very socially mediated things, and psychological
things, and personality traits, it's not, or very, very rarely,
going to be the case that there is this kind of strong genetic
causality between one or a few genes and some kind of social outcome,
if you will.
One-drop rule and our common African ancestry
some ways, we all have African ancestry. This is something that
anthropologists have believed for a long time, and the genetics
that we're doing is bearing that out. Modern humans came out of
Africa, migrated out of the human population in Africa. Some people
stayed in Africa. But basically, we all have African ancestry
somewhere in our past.
Now, at certain points in this country,
we've actually had laws trying to define who was Negro or black.
And in essence, that is trying to define who is close to African
ancestry. And so we had this "one-drop rule," this law that said
basically if you had one drop of black "blood," you were black.
And although those laws are gone, they still influence the way
we think about races today. So in the United States, we talk about
very light-skinned black people. And in a sense, that's the same
thing as saying, "This is a person who has one drop." This person
has maybe some African ancestry, and as long as we can see any
African ancestry, as long as something is visible to us that looks
like African ancestry, we tend to categorize that person as black.
in truth, we all have African ancestry. The only question is how
recent that ancestry has been. I mean, there is some way in which
we all have one drop of African blood in us, if not more than
Actually, there have been times in this country, especially
in the late 1800s and the early 1900s, when each state had its
laws or its judicial decisions defining whether one was black
or white. And that mattered a lot. It mattered because if you
were black, then there were certain things, legally, that you
could not do, certain places to which you did not have access,
educational opportunities, etc. So it really mattered.
the different states defined black and white differently.
One of the concerns about genetics and populations
has to do with the targeting of at-risk populations. In other
words, trying to understand when some group of people, however
defined, has in that group a higher proportion of some allele
that puts them at risk for a disease.
That kind of targeting
can be useful for a couple of reasons. One is that you get fewer
false positives if you have more real positives in the group of
people whom you are testing. So one reason we want to target at-risk
populations is to get better testing accuracy, and that's true
whether you're talking about genetics or anything else. If you're
going to do some sort of screening where you're testing everybody
in a population, you don't generally want to screen a population
where almost nobody has what you're screening for.
issue is economic. We don't have the resources in this world to
do every single medical test on every person; we don't have the
resources to do neonatal testing for every possible malady somebody
might have. It's not just that it's economically inefficient.
At some point it becomes perhaps immoral to use resources in that
way. They're scarce, in a sense, and they could be put to much
better use some other way.
So we don't just want to go around
testing everybody for every conceivable thing that they might
have or get. This means we have to make some choices, and trying
to identify at-risk populations is one of those ways of making
choices about when it's efficient enough that it's both economically
feasible and perhaps morally acceptable to go around doing a kind
of screening test on a group of people.
Then the question is,
how do you define an at-risk population? And we have used race
and ethnicity as ways of doing that. So we've used race as a way
of deciding who might be at risk for sickle cell disease; ethnicity
to decide whether or not somebody is at risk of having Tay-sachs,
or other conditions that are inherited through the Ashkenazi Jewish
ancestry. And so the question is, how do you define what the at-risk
population is? How do you define that population for whom it seems
acceptable to be doing screening tests? Are race and ethnicity
the best ways of doing that?
Because it's always a kind of
proxy. What you're trying to do is just narrow down a group of
people in which there will be more than the average number of
at-risk people in this group. Sometimes, in the past, race and
ethnicity have been the only way we've had to do that, in a sense.
And we still haven't done it very well. Because we could be asking
people more specific things about their ancestry, rather than
just looking at them and thinking, are you black, or asking them,
"Are you Jewish?" as a way of putting them into the at-risk or
not category. We could have been asking people more specific things
about their ancestry now.
So it may be that in some cases we
can ask people questions about their ancestry to narrow the at-risk
population, to define it better, to define it more effectively
than using race or ethnicity kinds of questions. Sometimes we
might not be able to do that, because people might not, in general,
know enough about the specifics of their ancestry for you to identify
whether or not they are derived from people who are more likely
to have sickle cell alleles, for example. But we do need to be
careful. At least we need to be asking things to let us know if
people have ancestors from India or a part of India or Greece
where they might be at risk for sickle cell.
And similarly with
Tay-sachs disease, there are other populations besides those descended
from Ashkenazi Jewish populations. There are other populations
where people might be at risk for Tay-sachs. We know this. We
know that people descended from Acadians, French Canadians, have
higher risk for Tay-sachs disease. So if we're trying to define
at-risk in some way, if we just ask about Ashkenazi Jewish descent,
we're still not doing a good enough job.
And it's always a tradeoff.
If you can somehow define a population that is smaller than everybody
who is born, and capture most of the people who are at risk in
this more narrowly defined population, that has real advantages.
But inevitably, some people will fall through the cracks. Just
inevitably, there will be white people running around with sickle
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