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6
Promoting and Sustaining Public
Trust in Exposure Science
The vision of exposure science articulated in the preceding chapters re-
quires broad public support for gathering information on human and environ-
mental exposures. That support involves understanding the aims of exposure
science and a perspective that exposure science is integral to decision-making,
including developing mitigation and prevention strategies that advance societal
goals and objectives. If support is to weather the inevitable challenges, it is criti-
cal that researchers and stakeholders share values of and expectations for expo-
sure science. In addition, appropriate safeguards and definable ethical standards
to protect volunteers who give their time for exposure research are needed.
Those considerations illustrate that the long-term success of human and envi-
ronmental exposure science requires that attention be focused on the ethical and
societal issues raised by modern research practice.
Although human exposure studies typically present only minor risks to re-
search volunteers, several studies have sparked controversy. For example, the
Children's Environment Exposure Research Study (CHEERS), a proposed study
that was intended to examine how children may be exposed to pesticides and
other household chemicals generated considerable mass-media interest and con-
tributed to fears that children would be placed at increased risk. The concerns
prompted the U.S. Environmental Protection Agency to cancel its plans for the
study (Resnik and Wing 2007). Reactions to the proposed study resulted in rais-
ing the bar for the conduct of observational exposure studies and led to the pub-
lication of Scientific and Ethical Approaches for Observational Exposure Stud-
ies (EPA 2008), which provides guidance for conducting observational studies.
The CHEERS study, together with other controversial studies, highlight a num-
ber of ethical and societal issues that need to be navigated successfully to
achieve the committee's vision for human and environmental exposure science.
In this chapter, the committee addresses considerations related to the pro-
motion of public trust in exposure science. Although none of the issues dis-
154
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Promoting and Sustaining Public Trust in Exposure Science 155
cussed is peculiar to exposure science, how they present themselves can pose
special challenges for observational studies. That is particularly true of ethical
issues associated with ubiquitous technologies--new personal and environ-
mental monitoring tools--whose use and availability are expected to become
more prevalent. As technologies evolve our capacity to detect chemicals and
other stressors at increasingly lower levels is outpacing our capacity to interpret
what the findings mean for health, subclinical effects, or even for elucidating
potential exposure reduction strategies, creating scientific and ethical challenges
for society.
PROTECTING RESEARCH VOLUNTEERS
Exposure-science research may involve observational studies of humans
and the environments in which they live. The ability to conduct exposure studies
in all populations, particularly among the most vulnerable (for example, the eld-
erly, children, and the infirm) is critical to understanding and preventing harmful
exposures and risks in society. As with all research involving human subjects, it
is vital that measures be implemented at the beginning of a study to protect the
rights and welfare of participants (volunteers). In cases that lack such protec-
tions, research subjects may be needlessly placed at increased risk, which can
threaten not only their well being but the long-term success of human and envi-
ronmental exposure-science research.
All exposure-science research involving human subjects must be reviewed
and approved by an appropriate institutional review board (IRB) and be consis-
tent with national ethics standards. Many of the ethical considerations that
should guide the conduct of observational exposure studies are discussed in the
recent EPA report Scientific and Ethical Approaches for Observational Expo-
sure Studies, which provides well-defined and documented procedures for con-
ducting exposure-related research. That report describes two primary elements
for human-subject protections: review by an impartial IRB and informed consent
of research subjects.
High standards of ethical conduct in human-subjects research are enforced
by multiple oversight committees or review boards, which examine both scien-
tific and ethical details of the proposed research. IRBs include appropriate medi-
cal and scientific experts who are not directly involved in the conduct of the
research and who do not have any personal interests in the study. They also have
members outside the scientific community. In deciding whether a research study
is acceptable, IRB members are asked to consider whether or not the foreseeable
risks to participants are appropriately minimized and acceptable in light of the
potential benefits to participants and to society.
The process of seeking informed consent of participants is a second key
element of ethical conduct in research. Informed consent ensures that subjects
give their voluntary and informed consent to be participants in a research study.
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156 Exposure Science in the 21st Century: A Vision and A Strategy
In addition to consenting to participate in a study, participants can consent on
whether or not they want their results (Morello-Frosch et al. 2009). (Additional
discussion is found in the section, Returning Research Results.) Researchers
conducting observational exposure studies are expected to seek permission from
research subjects who must be informed about the goals of the research, the spe-
cific procedures involved, and the potential benefits of and risks posed by par-
ticipation. That kind of communication does not end when a research subject
signs a permission form or otherwise indicates his or her willingness to partici-
pate. As a study progresses and new findings are discovered, investigators are
expected to communicate to research subjects any changes that have been made
in the study protocol. It is through such regular communication that consent to
participate is reaffirmed. If an important risk is detected, the investigators are
also obliged to report it to the participants and the funding agency involved.
Typically, observational studies that do not involve efforts to mitigate hu-
man exposures present minor risks to the people who participate as research
subjects. However, in addition to minor burdens associated with the collection
of exposure data, without full communication such studies may also increase
participants' exposure in unintended ways, for example, by promoting an unwar-
ranted sense of protection to subjects through their wearing of exposure-
monitoring devices. Observational studies can also present risks related to the
unintended disclosure of private information; for example, release of medical
records might impair a person's ability to obtain employment. To address those
possible risks, investigators should strive to ensure that data are protected and
that research subjects understand any potential risks associated with their par-
ticipation.
The committee acknowledges in addition to observational exposure stud-
ies, there are intentional dosing studies that can involve potential increases in
harmful exposures. For example, a study conducted in London, England, had
asthmatic volunteers walk routes with low and high exposures to air pollution
(McCreanor et al. 2007). In another study, men suffering from congestive heart
failure were exposed to high concentrations of diesel exhaust, which has been
linked to an increased risk of a coronary event (Mills et al. 2007). Such studies
raise additional ethical considerations (see NRC 2004); but these studies fall
outside the scope of this committee's charge.
It is critical that scientists conducting research with human subjects not
have conflicts of interest that may impair their ability to conduct the research
ethically. Financial relationships with industry sponsors of research should be
disclosed to IRBs and other research-oversight boards, such as university com-
mittees on conflict of interest. Sources of research funding should be disclosed
to potential volunteers when they are approached to participate in a study, as
should any financial relationships of the investigators with commercial entities
that may be affected by the outcome of the research. Such disclosures can pro-
mote public trust by increasing transparency and giving study volunteers the
opportunity to assess the full array of potential benefits and risks associated with
their participation in the research.
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Promoting and Sustaining Public Trust in Exposure Science 157
PROMOTING PUBLIC TRUST
Public trust must be promoted to foster support for exposure-science re-
search. Mass-media coverage of higher-visibility studies has at times mischarac-
terized key aspects of study design, reinforcing distrust of regulatory agencies
and fueling concerns about the identification of human and environmental
stressors. To maintain public confidence in the integrity of exposure science,
innovative forms of public engagement are required. They should foster public
understanding of the purpose, benefits, and limitations of human and environ-
mental exposure-science research and its potential contributions to public health.
Engaging the public through education may be needed to improve under-
standing of how exposure-science studies have made great strides in identifying
and reducing harmful exposures. Examples are described in earlier chapters and
in a recently published series of exposure-science digests (Graham 2010). These
and other exposure-science studies have contributed to greater understanding of
the health effects of hazardous environments and have helped to reduce the like-
lihood of future adverse exposures.
Exposure scientists should engage members of the public in identifying
and addressing relevant health concerns. To advance that goal, it is critical that
members of the public be able to access information from human and environ-
mental exposure studies. Although exposure studies are often intended to serve
as the basis of regulatory policy, the data that they produce may have relevance
for other purposes. In particular, members of the public may find results of ex-
posure studies useful in addressing local environmental conditions--for exam-
ple, in modifying local planning or zoning ordinances or blocking construction
of new facilities on the basis of data showing that the community will be bur-
dened by increased exposure to environmental stressors. Exposure information
may also help members of the public in making personal choices about their
environments, including their behaviors, diet, housing, employment, or the pur-
chase of personal products, and can be used by community organizations and
individuals to provide input to decisionmakers.
COMMUNITY ENGAGEMENT AND
STAKEHOLDER PARTICIPATION
Exposure science can help communities to identify and address differen-
tial, cumulative, and emergent exposures. Community members can be among
the first to identify an exposure of concern. Once the design of a community-
based exposure study begins, community members may be found to have a
wealth of information about the exposures of potential concern. Communities
are all too often the "subjects of" health studies and have little input into the
problems to be studied. Recognizing potential community knowledge and adopt-
ing a spirit of openness in disseminating exposure-related data are pivotal for
building trust. Correspondingly, conducting exposure studies in the absence of
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158 Exposure Science in the 21st Century: A Vision and A Strategy
community input or failing to maintain communication with affected communi-
ties may greatly diminish public confidence in exposure science and reinforce
distrust of scientists engaged in this work (NRC 1989; 1996). Engaging mem-
bers of differentially affected communities is critical for increasing public trust
and improving stakeholder participation in exposure science. Federal and private
funding agencies have been providing increased support for community-engaged
exposure studies, recognizing that this contributes to improving study results
through better recruitment and retention of study participants and through dis-
semination of study results to diverse public audiences (Brown et al. 2012).
Open discussion is necessary if community members are to have input into
problem formulation and ultimately to benefit from research findings. The
groundwork for such discussion lies in effective multidirectional communication
among all stakeholders, including members of affected communities, scientists,
public-health agencies, and policy-makers (Chess et al. 1988; NRC 1989, 1996;
Lundgren and McMakin 2009). Effective communication underlies all stages of
research, from identifying the stakeholders who should be at the table to under-
standing how research findings can best be shared with community members.
Outreach and engagement not only provide the vehicle for disseminating the
results of exposure studies but provide the opportunity for researchers to listen
to community members so that they can identify preferred approaches and for-
mats for dissemination. Such information may assist communities in developing
new public-health interventions, environmental policies, or community-
development initiatives to reduce harmful exposures.
USE OF COMMUNITY-BASED PARTICIPATORY RESEARCH
A trend in public-health research is the engagement of affected communi-
ties and populations through the use of community-based participatory research
(CBPR). Members of differentially burdened and exposed communities have
turned to CBPR as an approach to communicate their environmental-health con-
cerns to scientists and promote collaborative research. As part of CBPR, com-
munity-based organizations use their grassroots activism and resources, "expert
local knowledge", and university partners to develop a framework for studying
differential health effects at the local level (Wilson et al. 2008; Baron and Wil-
son 2011). Critical to this approach is an effort to put scientific knowledge into
practice by dissolving traditional boundaries between knowledge and action.
CBPR acknowledges the community as a unit of identity and builds on commu-
nity strengths and resources to facilitate more equitable partnerships that involve
power-sharing and community empowerment (Israel et al. 1998).
Many community-based environmental justice and health organizations
exist across the United States, for example, West Harlem Environmental Action,
in New York City; Concerned Citizens of Tillery, North Carolina; Alternatives
for Community and Environment, based in Boston, Massachusetts; and the En-
vironmental Health Coalition, in San Diego. Many of these organizations have
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Promoting and Sustaining Public Trust in Exposure Science 159
engaged in community-driven research to obtain locally relevant exposure data
on a variety of environmental health issues, including air pollution in metropoli-
tan areas, housing stock, burden of pollution from industries, locally unwanted
land uses, transportation issues, and industrial animal production (Shepard et al.
2002). Using CBPR, they and other organizations have leveraged their local
knowledge in collaboration with university partners to develop a framework for
addressing environmental health and justice issues at the local level (Wilson et
al. 2008). Using that approach, community-based organizations have become
more involved in creating research agendas that advance the goals of differen-
tially affected communities (see for example, Box 6-1 which describes the role
of CBPR in reducing adverse exposures and advancing the health of the com-
munity of Spartansburg, SC).
BOX 6-1 Case Study of Exposure Justice and Community
Engagement: ReGenesis in Spartanburg, SC
The city of Spartanburg is in northwestern South Carolina and has a
population of 40,000, about 50% black and 50% white (EPA 2003, 2006).
This former "textile town" has undergone a transformation with its revitalized
downtown and a concentration of international business firms within the city
limits (EPA 2003, 2006; Fleming 2004). However, the Arkwright and Forest
Park neighborhoods, just beyond the city's downtown, are two predominantly
black neighborhoods with a combined population of almost 5,000 residents
that has not benefited from the revitalization efforts (EPA 2003, 2006; Fleming
2004). The closing of local mills and plants and the lack of zoning regulations
and land-use controls (EPA 2003, 2006; Fleming 2004; Habisreutinger and
Gunderson 2006) left the population poor (25% in poverty) and underem-
ployed (10% unemployment) (EPA 2003, 2006).
The two neighborhoods are affected by environmental exposures. For
example, the residents were exposed to a 40-acre International Mineral and
Chemicals (IMC) fertilizer plant (a Superfund site); the Arkwright dump, a 30-
acre former municipal landfill (a Superfund site); the Rhodia chemical plant (in
operation); the Mt. Vernon textile mill (in operation); and six brownfields (EPA
2003, 2006; Fleming 2004; Habisreutinger and Gunderson 2006; ReGenesis
2008). About 4,700 people lived within 1 mile of the IMC site and 200 within
0.25 mile of the landfill (EPA 2003, 2006; Fleming 2004; ReGenesis 2008).
Those exposures have been associated with a high rate of cancer--
particularly bone, colon, and lung cancer--and high rates of respiratory ill-
nesses, adult and infant mortality, miscarriages, and birth defects (EPA 2003,
2006; ReGenesis 2008). In addition, neighborhood residents had a poor
transportation infrastructure, inadequate sewer and water services, lack of
access to medical care, public-safety issues, few economic opportunities, and
declining property values (EPA 2003, 2006).
(Continued)
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160 Exposure Science in the 21st Century: A Vision and A Strategy
BOX 6-1 Continued
In 1997, Harold Mitchell, a resident concerned about the environmental
contamination in his community, began organizing community meetings to
discuss environmental justice and health issues (EPA 2003, 2006; Fleming
2004; ReGenesis 2008). The meetings empowered local residents and moti-
vated efforts by the government and industry to clean up the contaminated
Superfund sites and brownfields. This community-driven collaboration be-
came known as the "ReGenesis Project". ReGenesis built an environmental-
justice partnership with the city of Spartanburg, the county, the EPA Region 4
Office of Environmental Justice, the Department of Health and Environmental
Control, the Spartanburg Housing Authority, the county's Community and
Economic Development Department, local industry, and the University of
South Carolina to address environmental effects on local health and adopt
strategies to revitalize the Arkwright and Forest Park neighborhoods (EPA
2003, 2006).
With help from EPA Region 4, in 2000 ReGenesis was designated a na-
tional demonstration project of the Federal Interagency Working Group on
Environmental Justice, giving it access to financial resources, technical ex-
perts, and information (EPA 2003, 2006). With that designation, new funding
was made available, and local, state, and federal agencies began to under-
stand that action was needed in the Arkwright and Forest Park neighborhoods
to improve public health (EPA 2003, 2006). Spartanburg County was awarded
additional funding through EPA's Brownfield Initiative to perform site assess-
ments of the brownfields (EPA 2003, 2006; Habisreutinger and Gunderson
2006; ReGenesis 2008). The brownfields assessment found contamination
and led to government agencies' providing additional funding to clean up the
sites for redevelopment (EPA 2003, 2006; Habisreutinger and Gunderson
2006; ReGenesis 2008). The success of ReGenesis in working with its col-
laborative partners for assessment, cleanup, and redevelopment of brown-
fields and other industrial sites also led to additional efforts to improve the
health-promoting infrastructure of the Arkwright and Forest Park neighbor-
hoods.
The CBPR approach allows the research process to increase a commu-
nity's ability to study differential and cumulative exposures, address environ-
mental justice and health issues, and increase engagement of minority-group and
low-income stakeholders (Minkler et al. 2006; Wilson et al. 2008; Baron and
Wilson 2011). For example, CBPR was used to obtain community-generated
dietary consumption data for subsistence anglers in the East River of New York.
These data, together with fish tissue contaminant concentration data were used
by EPA in calculating risk estimates for exposures to contaminants in fish (for
example, cadmium, mercury, and dioxins) consumed by the local, ethnic popula-
tions, when no appropriate dietary assessment data were previously available for
this high-risk group (Corburn 2002). Members of the community were essential
for collecting this consumption data given the cultural and language barriers of
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Promoting and Sustaining Public Trust in Exposure Science 161
the anglers. Similarly CBPR has been used to help assess farmworkers' pesticide
exposures and associated health effects (Acury et al. 2001); a particularly diffi-
cult population to study given their transience and changing occupational status,
language barriers, and questions regarding immigration status. Kamel et al.
(2001) used community collaboration (working with the Farmworker Associa-
tion of Florida and relying on the members' expertise) to identify and recruit a
valid sample of farmworkers for an epidemiologic study.
CHALLENGES AHEAD
The new research paradigms and exposure-monitoring technologies de-
scribed in the preceding chapters will magnify current debates about exposure
science and pose additional challenges in maintaining public trust. The potential
for increasing private-sector involvement in this field of research may raise ad-
ditional concerns about personal privacy. Future studies may seek to relate envi-
ronmental exposure data to other large databases, including data on cellular-
telephone use, global positioning system location, food consumption, and con-
sumer shopping patterns. Although it may not be possible to anticipate the full
array of challenges that lie ahead, several important issues can be identified
now.
Returning Research Results
A difficult challenge in exposure studies concerns whether, when, and
how to return exposure information to study participants (Schulte and Singal
1996). That issue can be raised at both at an individual level and a community
level and can be especially difficult in contexts in which exposure studies take a
long time, there may not be a direct relationship between researchers and sub-
jects, or if the exposure data do not provide clear insights regarding the potential
health effects, sources, or pathways of exposure. Questions about the return of
personal exposure information will become more common as new collection
methods obtain "personalized" forms of exposure data. Such data might be col-
lected with ubiquitous monitoring devices, such as personal cellular telephones
(see discussion in Chapter 5). As the volume of data collected continues to ex-
pand, exposure scientists need to consider the most appropriate approaches for
reporting information on a multitude of exposure sources, some of which might
be ambiguous with regard to importance, might be sensitive, or might pose per-
sonal risks to individual participants (for example, in legal proceedings) (Deck
and Kosatsky 1999; Morello-Frosch et al. 2009). In addition to returning expo-
sure data to participants, consideration will need to be given to how to place the
data into context with respect to whether there are potential health implications
or a need for people to take action to reduce exposures.
At the present time there is little guidance for scientists and academic-
community researchers on reporting back individual and community-level expo-
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162 Exposure Science in the 21st Century: A Vision and A Strategy
sure data to study participants (NRC 2006). For example, few precedents exist
for reporting biomonitoring data back to individuals when little information is
available for interpreting health implications (Morello-Frosch et al. 2009). Mo-
rello-Frosch et al. identified distinct frameworks used by scientists for reporting
back biomonitoring results. For example in the clinical approach, that is bio-
medically driven, reporting individual biomonitoring results is based on whether
the risk relationship between exposure and health effects is understood. With
CBPR, sharing of individual and community-level exposure data are encouraged
between researchers and participants because it is believed that these data can
have an impact beyond individual health, including in allowing communities to
understand sources and potentially reduce exposures.
There appears to be movement in favor of addressing the issue of report-
ing-back exposure data in the recruitment and consent process of research stud-
ies. The ethical issues of reporting back exposure data will become more com-
plex as data are increasingly integrated, reinforcing the need to address the
rights of study participants before, during, and after studies are conducted. This
is particularly true if exposure samples are to be stored for use after a study is
completed (Morello-Frosch et al. 2009).
Engaging Affected Communities
As noted above, there are numerous challenges related to how scientists
engage differentially burdened and exposed populations to address health dis-
parities. With increasing recognition of the importance of social and ecologic
stressors in human health, how we engage these populations in multiple aspects
of exposure science--before, during, and after exposure studies--takes on even
greater importance.
To be effective, community engagement must be multidirectional, with
sources and receivers of information in constant communication with each other.
Because scientists and the public may have different perceptions of risks (see,
for example, Slovic et al. 2000), those responsible for communicating risks iden-
tified through exposure science need to understand stakeholders' values, con-
cerns, and perceptions. Failure to recognize the differences and address them
appropriately can cause failures in communication. In addition, the social con-
text in which communication occurs and the extent to which sources of informa-
tion are trusted play a critical role in how information is understood (Slovic et
al. 2000; Miller and Solomon 2003).
Studying Susceptible and Vulnerable Populations
Ethical issues associated with exposure studies that involve susceptible
and vulnerable populations--such as children, economically disadvantaged
populations, the infirm, and workers--will continue to present challenges for the
field of exposure science and the rest of environmental health. With the increas-
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Promoting and Sustaining Public Trust in Exposure Science 163
ing reliance on chemicals in products and improvements in our knowledge about
mixtures, cumulative exposures, and exposures at different life stages, the field
of exposure science will be challenged to perform ethical studies that involve
and will ultimately protect susceptible and vulnerable populations. There will be
a greater demand for this type of research to advance the state of knowledge
while balancing the needs of those populations and to perform exposure research
that is beneficial and produces high-quality data that can be used to reduce and
eliminate human exposures.
Protecting the Natural Environment
Protecting and maintaining the integrity and health of ecosystems is criti-
cal because human society depends on natural processes and goods provided by
natural ecosystems. As discussed in Chapter 1, ecologic systems support human
health and well-being. Thus, even from an anthropocentric perspective, altera-
tions of natural ecosystems that reduce their capacity to provide ecologic ser-
vices may harm current populations or future generations. This perspective is
distinct from the continuing discussion within environmental ethics regarding
the need to extend the traditional boundary of societal concerns, which center on
human concerns, to include nonhuman elements of our world (Des Jardins
2012).
To the extent that human health and ecologic health are inextricably
linked, agencies that fund exposure-assessment studies will need to consider the
long-term value of funding studies that focus on ecologic and environmental
consequences of exposure even when direct effects on human health may be
unclear. This approach reflects growing awareness that our global ethical re-
sponsibilities extend beyond humans and include the nonhuman elements of
ecosystems. In addition, environmental stewardship is essential for supporting
the full array of ecosystem services on which human health and well-being de-
pend. Although budgetary pressures may make it difficult to advocate for studies
of environmental exposure, advancing exposure science requires recognition of
the interconnectedness of human health and ecologic health.
GUIDING VALUES: THE RIGHT TO LEARN
In developing practical approaches to societal challenges that will increase
public support for exposure science, researchers conducting exposure studies
should be mindful of the guiding values that shape their research. The investiga-
tion of environmental problems is an inherently ethical undertaking entwined
with competing societal and political values. A researcher's choice to investigate
a particular toxicant or geographic location, for example, validates a set of socie-
tal concerns about specific risks, irrespective of the eventual outcomes of the
research. In addition, the limitations of public resources for research require
federal agencies and the researchers that they support to be good stewards of the
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164 Exposure Science in the 21st Century: A Vision and A Strategy
resources and to choose to pursue problems that have the potential to improve
public health. Studies of human exposures can create new legal and ethical obli-
gations, both for those who have created an environmental hazard and for those
who are exposed.
Human and environmental exposure-science research can seem distant to
the public. Those who are familiar with exposure science have tended to view
the field as driven largely by regulatory and political agendas. In addition, how-
ever, there is a need to convey to the public the rich array of information gener-
ated by human and environmental exposure science. With the development of
smart phones and ubiquitous sensing, providing such information through moni-
toring of exposures is becoming more feasible. We elaborate on the need for
transparency and engagement below, following the general theme of moving
from source to dose.
1. Sources--We believe that people have a right to learn about sources of
environmental exposures that potentially affect their health and well-being
or the health of the ecosystems on which they depend. As with all research
for public good, the exposure science community needs to make sure that
ways are found to educate people about sources of exposures that may af-
fect their health and well-being.
2. Ambient and indoor concentrations--People also have a right to
know about exposure concentrations in all the microenvironments that
they inhabit, and there is a reciprocal duty for researchers and others in-
volved in the translation of scientific data to educate people about ambient
concentrations that may affect their health.
3. Personal actions and exposures--People have a right to know how
their own personal actions affect the environmental exposures that they
encounter and how behavioral changes can reduce these exposures. To the
extent that exposure assessment has traditionally been driven largely by
regulatory purposes, there is a need to reorient the focus of exposure as-
sessment to engage a more diverse set of stakeholders in decisions about
the direction of human and environmental exposure science. Needs for
translation of exposure science to educate citizens extends from informing
people about how they can change their behaviors to improve personal
health to informing those responsible for sources of harmful exposures
how they can reduce harmful emissions and thereby contribute to improv-
ing environmental and public health.
4. Body burdens of exposure--With the advent of "-omics" technolo-
gies, we anticipate a wealth of information on body burdens of exposures.
People who supply such information have a right to know about the body
burdens of exposure that they carry, and it is incumbent on those collect-
ing exposure data to educate people who have donated the data about their
potential consequences.
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Promoting and Sustaining Public Trust in Exposure Science 165
Those values are consistent with another major theme in our report,
namely, that exposure science needs to move beyond the assessment of ambient
exposures to the characterization of dose. Emerging surveillance technologies
will soon allow ubiquitous, large-scale monitoring of body burdens from multi-
ple exposures. Although individual citizens will have different levels of interest
and resources for learning about their environmental exposures, embracing the
above values will help to ensure that exposure science engages a broad and di-
verse group of stakeholders who are interested in learning more about their per-
sonal exposures.
CONCLUSIONS
To be deserving of the public trust entails a commitment to maintaining
the highest standards of integrity in exposure-science research. Scientists en-
gaged in exposure assessment need to structure their studies in a way that is re-
spectful of research volunteers and minimizes the potential for harm to people
who make their research possible by voluntarily participating in exposure stud-
ies. When conducting participatory research, scientists should engage affected
communities and populations in order to generate useful exposure information
that stakeholders can use to reduce and eliminate their exposures and improve
community health.
As we prepare for a time when new exposure-monitoring technologies and
research paradigms expand the traditional scope of exposure-assessment studies,
it is critical to anticipate ethical challenges that will present themselves. Several
of the challenges stem from the collection of increasingly individualized data,
which can present greater risk for research volunteers or create an expectation
that results of potential importance will be returned to individual participants.
The expanding scope of exposure-assessment studies may also create opportuni-
ties to provide citizen-volunteers with exposure data that they would find useful
in reducing their personal exposure to environmental stressors. Scientists con-
ducting exposure-assessment studies and the agencies that support their work
should consider how to anticipate and respond to these challenges so as to
maximize the global impact of human and environmental exposure science and
sustain public confidence in the integrity of this evolving field of research.
Federal agencies that support human and environmental exposure sci-
ence need to develop educational programs to improve understanding of expo-
sure-assessment research. The programs need to engage members of the general
public, specialists in research oversight (such as members of IRBs), and specific
communities that are differentially burdened by environmental toxicants.
Federal agencies and professional societies should develop programs to
assist exposure scientists in navigating the complex terrain of human-subjects
research. Changing regulatory requirements demand that exposure scientists stay
current with IRB expectations. Better communication between exposure scien-
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166 Exposure Science in the 21st Century: A Vision and A Strategy
tists and regulatory specialists can help to ensure that the expectations are trans-
parent to those engaged in exposure-science studies.
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eds. Oxford: Oxford University Press.
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