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European Journal of Epidemiology (2007) 22:215–221 Ó Springer 2007

DOI 10.1007/s10654-007-9108-3

METHODS

Can ethical reasoning contribute to better epidemiology? A case study


in research on racial health disparities

Inmaculada de Melo-Martı́n1 & Kristen K. Intemann2


1
Division of Medical Ethics, Weill Medical College of Cornell University, 411 E. 69th Street, New York, NY, 10021, USA;
2
Department of History and Philosophy, Montana State University, Box 172320, Bozeman, MT, 59717-2320, USA

Accepted in revised form 2 January 2007

Abstract. A common belief among epidemiologists performing such research. Values are implicit in the
and other scientists is that they ought not engage in framing of research questions, the identification of
ethical evaluation or endorse any particular ethical, the problem, and the choices of design and method-
political, or social values while involved in scientific ology. By making value judgments explicit, scientists
reasoning. Such values are irrelevant to collecting and will be more likely to pay attention to them and thus
interpreting data and can only lead to bias. This view assess them in critical ways. Finally, the implications
is also reflected in scientistsÕ education. The authors that this has for scientific training are discussed.
argue that ethical values are crucial to conducting Scientific training should prepare scientists to engage
much epidemiological research. Focusing on epide- in ethical reasoning not only because it will make
miological research on racial health disparities, they them more responsible human beings, but also
show that value judgments are inescapable when because it will make them better scientists.

Key words: Epidemiology, Ethical analysis, Ethics training, Value judgments

Introduction tance of much epidemiological work is often justified


in relation to ethical and social goals: eliminating
It is generally held that epidemiologists and other diseases, improving patient care, and using resources
scientists ought not engage in ethical analysis or en- more effectively and efficiently. The assumption,
dorse any particular ethical, political, or social values however, is that these goals have no implications for
while involved in scientific reasoning [1–3]. According how epidemiological research is conducted or how
to this view, such values are irrelevant to collecting scientists reason.
and interpreting data and can only lead to bias. Of In this paper, we argue that ethical values are
course, it is widely agreed that ethical considerations crucial to conducting much epidemiological research.
can be important to science in certain ways. For Focusing on epidemiological research on racial health
example, scientists, like any professionals, are con- disparities, we will show that epidemiologists must
strained by ethical obligations such as abiding by endorse particular public policy aims of the research,
human subject testing regulations, refraining from i.e. to reduce the prevalence or incidence of particular
fabricating data, or taking credit for the work of diseases, to eliminate disparities, or to improve health
others. In addition, value judgments may be impor- care delivery. Thus, they must make value judgments.
tant to scientists in their role as public policy advo- They must also make value judgments in determining
cates as they help inform policymakers or contribute how best these aims can be pursued. Values, then,
to decisions about how scientific knowledge might affect problem identification, as well as research
best be applied [4]. These ways in which values have methodology. This case study will show that ethical
been thought to be relevant to science, however, are reasoning can promote epidemiological research that
fairly peripheral. They occur before and after is more scientifically sound and more effective in
the work that scientists do as scientists is complete. addressing public policy aims. By making value
They are not thought to be relevant to the main judgments explicit, we are more likely to pay atten-
work that scientists do: developing and conducting tion to them and thus evaluate them in critical ways.
experiments, or collecting and analyzing data. Finally, we discuss briefly the implications that this
This view is reflected in scientistsÕ education. Sci- has for scientific training. Scientific training should
entific training typically does not include identifying prepare scientists to engage in ethical reasoning be-
and evaluating any ethical, political, or social issues cause it will not only make them more responsible
related to particular research areas. Yet, the impor- human beings, but also better scientists.
216

We do not intend to claim that ethical or social however, interest in using genetic science as a means
values never lead to bias. Clearly, sometimes partic- to both explain and eliminate racial/ethnic health
ular values have led scientists to interpret or ignore inequities has increased. Indeed, the purpose of sev-
data in ways that supported favored hypothesis. Of eral NIH funded initiatives is to identify genetic
course, it does not follow that because sometimes contributions to such disparities [8].
value commitments lead to bad science we should Although most researchers agree that social factors
eliminate all such commitments. It does follow, contribute to health inequalities, some also argue that
however, that some values might be inappropriate it would be wrong to ignore the role of genetics [9,
when conducting scientific research. If so, careful 10]. Many believe that understanding genetic varia-
evaluation and attention to value judgments is even tion across populations defined by race or genetic
more important. ancestry will assist in the identification, tracking, and
investigation of genetic factors that underlie racial/
ethnic differences in the prevalence and severity of
diseases. It will also help us to determine differences
Values and epidemiological research on health
in responses to drugs and other treatments. More-
disparities
over, identification of genetic factors that contribute
to health disparities will help develop preventive and
Despite improvements in the overall health of U.S.
therapeutic measures that address racial/ethnic health
citizens, racial/ethnic minorities still receive a lower
inequalities [11, 12].
quality of health services and have higher rates of
Other researchers argue that evidence that genes
morbidity and mortality than whites [5]. For exam-
have a significant influence on complex diseases is
ple, the infant mortality rate in 2002 for African-
scarce and that the distribution of polygenic pheno-
Americans, was more that twice as high as for whites
types does not suggest that race is a useful category
[5]. In 2001, the age-adjusted death rate for cancer
[13]. Others maintain that claims about medicines
was 25.4 percent higher for African–Americans than
having differences in safety or efficacy among racial/
for white Americans [6]. Similarly, compared with
ethnic groups are unsupported, [14] or that race
white adults, American Indians and Alaska Natives,
cannot offer the sensitivity and specificity necessary
African–Americans, and Hispanics are more likely to
to determine DNA sequence variation that can guide
have diagnosed diabetes [7].
preventive or curative measures [11].
There is broad agreement about the importance of
Both sides of this debate assume, however, that if
undertaking research on health disparities so as to
genetic determinants were found, then genetic re-
reduce or eliminate them. However, there are at least
search could assist us in reducing health disparities.
two main areas of disagreement as to how this aim
The debate, thus, is presented as a technical dis-
should be pursued. The first concerns the extent to
agreement about whether genetic differences under-
which resources to address this problem should be
lying health disparities exist and whether we have the
devoted to research in population genetics. The sec-
technical capabilities to find them.
ond concerns how race should be measured for pur-
Nevertheless, resolving this debate requires
poses of epidemiological studies. Making decisions
researchers to engage in ethical reasoning. If the aim
about these issues requires that scientists engage not
of epidemiological research on racial/ethnic health
only on discussions of technical matters, but also in
disparities is to minimize or eliminate such dispari-
ethical reasoning about the aims of the research, and
ties, scientists must make value judgments about
about which methods and research programs will best
whether genetic research would be a good way to
promote those aims. That is, whatever decision is
achieve such end. To support or reject the use of
reached, it rests on particular, often implicit, value
genetic research in the attempt to solve racial/ethnic
commitments. Our goal is to bring those values to the
health inequalities is not just to make technical
forefront, so that they can be recognized and care-
judgments about whether such disparities can be
fully evaluated.
traced to genetic differences among racial/ethnic
groups. It is also to make explicit or implicit value
Value judgments and decisions about research judgments about what the adequate means are to
programs achieve particular ethical and social goals of the re-
search.
Until recently, the main hypothesis for the origins of Defending genetic research as an adequate means
racial/ethnic health disparities emphasized social to reduce racial/ethnic health disparities presupposes
factors such as socioeconomic disadvantages that that knowledge of genetic variation among racial/
lead to unequal access to education, employment, ethnic groups could be translated into practices that
housing, and health services. Certainly, the idea that are likely to result in the eradication or diminution
genetics also played a role in such disparities is not of health inequalities [9–11, 15]. But such presup-
new. With the advent of the genetic revolution, position, and thus the conclusion that genetic
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research will be helpful in such a task, requires from unjust racial discrimination as opposed to those
scientists to evaluate political and social factors that that might be the result of genetic factors [22].1 If this
bear on the efficacy of genetic knowledge. Consider, is so, even if genetic research can be successful in
for example, hypertension, a condition that is twice addressing health disparities, researchers will need to
as likely to affect African Americans as whites [16, judge whether such research is the best way to ad-
17]. Some have argued that genetic factors increase dress the kinds of disparities that are most important
the propensity of black people of sub-Saharan to address.
African descent to develop high blood pressure [18]. If our arguments are correct, whether epidemiolo-
Others have indicated that such a genetic compo- gists decide to consider or disregard the social con-
nent can be found in the physiology of salt sensi- ditions likely to obtain when conducting
tivity [19, 20]. epidemiological research is to make value judgments,
In what way would such knowledge contribute to i.e., that researchers ought or ought not pay attention
reducing racial/ethnic health disparities in hyper- to such context, that using resources for investiga-
tension? One answer is that knowledge of genetic tions that would lend support to recommendations
variants will allow us to advance public health already encouraged is good or bad, or that to conduct
approaches. Measures such as promoting weight research that will lead to medications unlikely to be
loss, reduction of dietary sodium, adequate intake of accessible to relevant populations is problematic or
fresh fruits and vegetables, and increased physical acceptable.2
activity all can contribute to the prevention of Certainly, in many situations the social or political
hypertension [21]. Or it might be that knowledge of factors that affect the success of a research goal might
genetic variants could be particularly valuable in be uncertain. But this only means that such uncer-
counseling at-risk groups more effectively. Doctors tainty needs to be taken into account when making
could inform African–Americans that they are at value judgments. And of course, judgments that
increased risk for hypertension by virtue of genetic might be perfectly appropriate in a situation of
factors in addition to social factors. Also, once we uncertainty might be incorrect in one where we have
have knowledge of particular polymorphisms that the relevant knowledge. In any case, value judgments
contribute to the risk of hypertension, for example, cannot be avoided when conducting research on
this could be used to develop new drugs tailored to radical/ethnic disparities.
them. Still, genetic epidemiologists might argue that ge-
But the extent to which genetic research can help netic research should be prioritized not because of its
reduce health inequalities depends in part on the present value to achieve our goal, but because it has
social context in which these strategies are the potential to generate cures that will be effective in
employed. For example, if the recommendations diminishing health disparities in the long term. Thus
likely to result from genetic knowledge are already attention to the current social context is irrelevant. Of
part of standard medical practice, then they might course, determining whether genetic research will be
do little to contribute to the goal of reducing or able to eliminate health disparities in the future re-
eliminating health disparities. Similarly, whether the quires empirical research. Yet, justifying such
development of new drugs resulting from genetic empirical research would still require making value
research can help address racial health disparities judgments. For instance, epidemiologists must judge
depends, at least in significant part, on whether that efforts directed to greater future outcomes are
minority groups are likely to be able to afford better that those aimed at present amelioration.
expensive drugs. If targeted populations cannot
afford genetically tailored medicine, then such drugs 1
We recognize that focusing on health disparities that are the
will again do little to remedy health inequalities. result of unjust racial discrimination may be more of a concern for
Deciding whether this would be the case requires epidemiological research conducted in the U.S.A., or other coun-
making value judgments about our social and tries where there is a long and significant history of racial
oppression. This may become a more prevalent concern for
political context. European epidemiology due to immigration. Regardless, our point
Similarly, value judgments are also relevant to is that whether epidemiological researchers on health disparities
determining the particular health inequalities that focus on race, economic factors, or genetics depends on making
must be the subject of research. Such inequalities value judgments about how the research should be best focused to
might be the result of a variety of factors such as promote the ethical and social aims of the research.
2
Notice that we are not conflating ethical value judgments with
genetic differences, differential access to health care, judgments about social, political, or economic features of the world
or racial oppression. Defending genetic research as in which epidemiological research is conducted. In other words, we
key to diminishing health inequalities presupposes are not trying to reduce all social sciences to ethics. We recognize
that all such inequalities are equally deserving of our that there are a host of different judgments that may be relevant to
conducting epidemiological research. Our claim is that scientists
attention or that those resulting from genetic differ-
must make ethical value judgments in deciding whether to regard
ences are more important than other inequalities. or disregard particular features of the social context so as to
However, it might be that there is something partic- determine how best to engage in epidemiological research that aims
ularly problematic about health inequalities that stem to eliminate social health disparities.
218

In response to our arguments that epidemiologists research in health disparities, we do not mean that
must make value judgments in order to justify only those defending this type of investigation make
research programs, some might object that our value judgments. Decisions to pursue or prioritize
analysis conflates the scientific or epistemic aims of research on social determinants would also involve
epidemiological research with the public policy aims making similar kinds of value judgments (i.e., judg-
of the research or with particular interventions. One ments about what the social aims of the research are
might argue that the scientific aim of epidemiological and whether the examination of certain social factors
research is simply to determine whether there are would best promote those aims). Often such values go
genetic variants that are responsible for racial/ethnic unacknowledged. This is so, in part, because of the
health disparities. The aim is to produce scientific common belief that value judgments have no place in
knowledge. This can be distinguished from the public good science. But the fact that scientists lack training
policy aims of such research, such as the aim to to recognize and scrutinize them is also likely to
reduce or eliminate health disparities, and from spe- contribute to this problem.
cific interventions, such as recommending behavioral
changes or developing new drugs. Presumably, deci- Value judgments and measuring ‘‘race’’ in
sions about how best to pursue social and political epidemiological studies
aims and interventions are best left to policymakers,
while scientists should focus on determining the In addition to making value judgments about which
existence and causes of health disparities. research programs will be likely to promote the aims
This objection, however, is problematic because it of research on racial/ethnic health disparities, inves-
begs the very question at stake. It presupposes that tigators must also make ethical value judgments
values are irrelevant to the epistemic goals of the related to data collection decisions. In particular,
research. This is certainly a common view, but they must decide how race should be measured in
nonetheless one that we are rejecting in this paper. such studies [23].
The aim of research on health disparities is not just to Disagreements about race as a category in epide-
accurately describe health differences or determine miological studies have focused on whether we are
their cause, but to do so in a way that will be useful to measuring a characteristic with biological meaning or
making predictions, preventing greater disparities, a social construction [24, 25], whether race is a useful
and improving human health. As we have tried to category in biomedical research, and on questions
show, the scientific aims of research on health dis- about how race should be categorized [26, 27]. In all
parities i.e. why African–Americans have higher these instances, however, problems are usually seen
incidences of asthma than Caucasians, are insepara- as technical not as ethical issues. But decisions about
ble from its social goal, i.e. to eliminate such dis- how to best measure race depend on what we want
parities. At the same time this social goal also guides our racial categories to do. Hence, such decisions
decisions about what interventions would best require more than simply technical discussion; they
accomplish the goal. Such interventions however, i.e. require researchers to make value judgments.
development of new drugs, better access to health Health agencies have measured race in different
care, social policies that eliminate racial discrimina- ways. Prior to 1980, the National Center of Health
tion, must be grounded on particular research pro- Statistics (NCHS) classified a person as white if and
jects. For example, it would be odd to argue that a only if both parents were white [28]. After 1980, the
policy attempting to promote affirmative action as a NCHS began assigning race on the basis of the bio-
way to reduce racial discrimination is grounded on logical motherÕs race alone. The National Census
the results of genetic research directed to determine Bureau has allowed individuals to self-designate their
whether African–American at a higher risk for lung race since the 1960 census. Beginning in 2000, censusÕ
cancer than Caucasians. But if this is the case, respondents were given the option of self-designate
then we must use value judgments to decide what one or more race categories to indicate their racial
type of research to pursue, i.e., whether we will identities [29]. During the last decade, dissatisfaction
investigate genetic factors, economic aspects, or with self-identification has resulted in increased
unjust racial practices. And, as we have argued, each interest in employing ancestry-informative markers
of these possibilities is grounded on particular value and other gene-only approaches. The question is,
judgments. which method or standard for determining race is the
Furthermore, even if one agreed that genetic epi- best one? How should epidemiologists assign indi-
demiologistsÕ task is simply to produce knowledge, viduals to particular racial categories? Would it be
this also involves value judgments. For instance, sci- better to eliminate the concept of race?
entists must judge that knowledge is intrinsically Answers to these questions depend, again, on the
good or that we ought to use resources to produce aims of the research. They rest on what we want the
knowledge whether or not it is useful. category of race to measure in epidemiological stud-
Although we have focused on value judgments that ies [30]. As discussed above, a possible aim of health
genetic epidemiologists must make in pursuing their disparity research might be to detect and reduce those
219

that are the result of unjust discrimination. That is, value judgments. Indeed the pursuit of genetic re-
epidemiological researchers can develop tools that search on health inequalities, for instance, that
will assist us in identifying particular factors, in this explicitly endorses a methodology in which self-as-
case unjust discrimination, that contribute to racial cribed racial identity is replaced by genetic markers,
health inequalities. The identification of such factors makes the value judgment that the aim of epidemio-
can then be used to develop interventions that could logical studies is not to eliminate health disparities
prevent disease, promote health, and provide appro- caused by unjust racial discrimination. Similarly, a
priate medical care. These interventions presumably methodological choice to pay attention exclusively to
will contribute to our goal of reduction of racial/ factors such as socioeconomic status, personal pref-
ethnic health disparities. This aim can only be erences, or exposure to environmental hazards pre-
achieved, however, if we have a definition of race that supposes that it is not important to understand how
successfully identifies who is likely to be subjected to unjust racial discrimination contributes to health
racial discrimination and who is not. Which standard inequalities beyond such factors. Whether these
for measuring race best tracks how racial categories assumptions are correct is not the topic of this paper.
operate in racial discrimination? This is, of course, an Our point is that whether race is a useful category in
empirical question. But, conducting such work will health disparities research depends on value judg-
require scientists to make value judgments about ments related to the social aims of the research.
which behaviors, states of affairs, and material con-
ditions constitute unjust racial discrimination. Implications for science education
Similarly, if the aim of epidemiological research on
health disparities is to eliminate those caused by un- Currently, epidemiological education does not in-
just racial discrimination, we need a way of measur- clude training in ethical reasoning. In fact, scientists
ing race that allows us to monitor and track are discouraged from thinking about the ethical or
improvements or reductions in such inequalities. This social values related to their research, fearing that it
might be an argument in support of using older ways will lead to bias. But if our arguments here are cor-
of measuring race. Maintaining earlier classifications rect, epidemiologists often must consider and endorse
will allow for data comparison. certain social or political aims of the research and
If we are correct about the need to take into account determine how their research can best help promote
the aims of our research in order to determine how best those aims.
to measure race, then it follows that the concept of race Again, we are not claiming that ethical and social
in epidemiological studies requires making value values never lead to bias. Sometimes, relying on
judgments. Indeed, the goal of identifying health dif- particular values is inappropriate or distorts inter-
ferences caused by unjust racial discrimination, for pretation of data, leads scientists to disregard plau-
example, so that we can eliminate them and also sible alternative explanations, or causes scientists to
measure progress in reducing unjust racial discrimi- endorse a theory that is not warranted by the evi-
nation presupposes ethical and political commitments. dence. Giving an account of when values do or do not
It is these commitments that help us determine what lead bias in scientific research is beyond the scope of
we want the concept of race to do for us. this paper. We argue, however, that ethical values are
Epidemiologists might object that value judgments an intrinsic part of conducting epidemiological re-
can still be avoided if we stop using value-laden search. They simply cannot be avoided. But if this is
concepts like race altogether [31, 32]. Instead of so, we cannot assume that scientists should never
worrying about how to use the concept of race, epi- engage in ethical reasoning.
demiologists should focus on other, presumably less If this is right, then training in epidemiology should
value-laden factors such as genetic markers, drug include some training related to the ethical and social
metabolism, disease incidence, socioeconomic status, dimensions of research. Scientists need to be able to
education, or exposure to environmental hazards identify and evaluate the ethical values at stake in
[33]. Researchers could then have an accurate their studies. Moreover, scientists must justify their
understanding of disease risks and morbidity and methodological decisions in relation to the relevant
mortality rates on the basis of factors that do not rely ethical values when appropriate.
on the concept of race or on any value judgments We do not presume that values are always clear or
about racial discrimination. unproblematic, that they do not conflict with each
This objection presents several problems. First, it is other, or that there is not disagreement about what
not clear that the concept of race can be eliminated as values are better or worse. In fact, is it precisely be-
a significant category in epidemiological research. cause we believe that values might be better or worse,
Even when controlling for other factors such as ac- or that they might conflict with other values that we
cess, socioeconomic status, and education, there are desire to endorse that we advocate the importance of
still racial differences in health outcomes [34, 35]. ethical reasoning in scientific training.
Second, the decision to eliminate race as category Notice also that we are not arguing that training in
in studying health disparities is itself grounded on ethical reasoning is good for epidemiologists because
220

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Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.

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