Lewenstein, Brossard, 2006

Assessing Models of Public Understanding
In ELSI Outreach Materials
U.S. Department of Energy Grant DE-FG02-01ER63173
FINAL REPORT
Bruce V. Lewenstein, Ph.D. (Principal Investigator)

Dominique Brossard, Ph.D.
Department of Communication
Cornell University
1 March 2006
Table of Contents
LIST OF FIGURES.....................................................................................................................................................3
I INTRODUCTION.....................................................................................................................................................4
II THEORETICAL BACKGROUND .......................................................................................................................5

1. THE DEFICIT MODEL .............................................................................................................................................5
2. THE CONTEXTUAL MODEL ....................................................................................................................................6
3. THE LAY EXPERTISE MODEL .................................................................................................................................7
4. THE PUBLIC ENGAGEMENT MODEL .......................................................................................................................8
III METHODS ...........................................................................................................................................................10
1. MAPPING DOE-ELSI PROJECTS ..........................................................................................................................10
2. CASE STUDY ANALYSIS .......................................................................................................................................11
2.1. Selection of the Case Studies.......................................................................................................................11
2.2. Documenting the Case Studies....................................................................................................................11
1. In-Depth Qualitative Interviews With Project Leaders ............................................................................................... 12
2. Historical Review of Documents ................................................................................................................................ 12
3. Analysis of Web-Use .................................................................................................................................................. 12
4. Content Analysis of Documents.................................................................................................................................. 12
IV RESULTS .............................................................................................................................................................12
A. MAPPING DOE-ELSI PROJECTS .........................................................................................................................12
B. CASE STUDIES .....................................................................................................................................................16
1. Selection of the Case Studies..........................................................................................................................16
2. Case Studies Analysis.....................................................................................................................................16
1. A “Web-based” approach: The Geneletter.................................................................................................................. 16
2. A “Workshop Based Approach:” the Human Genome Project Information Conference, The Challenges and Impact
of Human Genome Research for Minority Communities”.............................................................................................. 21
3. A “Printed Book” Approach: Your Genes Your Choices (YGYC)............................................................................. 27
4. A “Multiple” Approach: A Question of Genes -- If Your Could Read Your Life Story . . . Would You Want to
Know How it Ends? ........................................................................................................................................................ 32
5. A “Radio-Program” approach: The Hispanic Episodes............................................................................................... 35
a. Presentation of the Project: Objectives and Intended Outcomes ................................................................................. 35
C. TEST OF THEORETICAL MODELS: CONCLUSIONS.................................................................................................37
V LESSONS TO BE RETAINED ............................................................................................................................41
REFERENCES ..........................................................................................................................................................43
APPENDIX: INTERVIEWS/CONTACTS PERFORMED...................................................................................46
2
List of Figures
Figure 1: Conceptual Models of Public Communication of Science and Technology................... 9
Figure 2: DOE-ELSI funded projects program areas (1994-2000) .............................................. 13
Figure 3: Audiences of DOE-ELSI Funded Projects (1994-2000)............................................... 14
Figure 4: Public Communication of Science Models and DOE-ELSI Educational Projects ....... 14
Figure 5: Main Communication Medium Used by the DOE-ELSI Educational Projects ............ 15
Figure 6: Revised Conceptual Models of Public Communication of Science.............................. 40
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I Introduction
Advances in the science of genetics have implications for individuals and society, and
have to be taken into account at the policy level. Studies of ethical, legal and social issues related
to genomic research have therefore been integrated in the Human Genome Project (HGP) since
the earliest days of the project. Since 1990, three to five percent of the HGP annual budget has
been devoted to such studies, under the umbrella of the Ethical, Legal, and Social Implications
(ELSI) Programs of the National Human Genome Research Institute of the National Institute of
Health, and of the Office of Biological and Environmental Research of the U.S. Department of
Energy (DOE). The DOE-ELSI budget has been used to fund a variety of projects that have
aimed at “promoting education and help guide the conduct of genetic research and the
development of related medical and public policies” (HGP, 2003).
As part of the educational component, a significant portion of DOE-ELSI funds have

been dedicated to public outreach projects, with the underlying goal of promoting public
awareness and ultimately public discussion of ethical, legal, and social issues surrounding
availability of genetic information (Drell, 2002). The essential assumption behind these projects
is that greater access to information will lead to more knowledge about ethical, legal and social
issues, which in turn will lead to enhanced ability on the part of individuals and communities to
deal with these issues when they encounter them. Over the same period of time, new concepts of
“public understanding of science” have emerged in the theoretical realm, moving from a
“deficit” or linear dissemination of popularization, to models stressing lay-knowledge, public
engagement and public participation in science policy-making (Lewenstein, 2003).
The present project uses the base of DOE-funded ELSI educational project to explore the
ways that information about a new and emerging area of science that is intertwined with public
issues has been used in educational public settings to affect public understanding of science.
After a theoretical background discussion, our approach is three-fold. First, we will provide an
overview, a “map” of DOE-funded of outreach programs within the overall ELSI context to
identify the importance of the educational component, and to present the criteria we used to
select relevant and representative case studies. Second, we will document the history of the case
studies. Finally, we will explore an intertwined set of research questions: (1) To identify what we
can expect such projects to accomplish -in other words to determine the goals that can
reasonably be achieved by different types of outreach, (2) To point out how the case study
approach could be useful for DOE-ELSI outreach as a whole, and (3) To use the case study
approach as a basis to test theoretical models of science outreach in order to assess to what extent
those models accord with real world outreach activities. For this last goal, we aim at identifying
what practices among ELSI outreach activities contribute most to dissemination, or to
participation, in other words in which cases outreach materials spark action in terms of public
participation in decisions about scientific issues.
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II Theoretical Background
“Public understanding of science,” or PUOS, is a relatively new field of scholarly inquiry

that has developed since the 1980s. PUOS related projects can roughly be placed in two broad
categories:
- projects that aim at improving the understanding public(s) have of a specific area of
science,
- projects that aim at exploring the interaction of the public and science.
Recent efforts have focused on integrating these two by linking research findings with
outreach activities. Such efforts have aimed at building conceptual models of public
communication of science that would give a comprehensive view of the frameworks that are at
play for research in the field and then implementing these models systematically. The following
sections discuss these models.
1. The Deficit Model
Not surprisingly, most discussions of public understanding of science emerge from within
the scientific community itself. The primary concern there has been, since at least the middle of
the nineteenth century, the lack of intellectual public support for scientific ways of thinking and
material public support for scientific work – the funds for research (Burnham, 1987; LaFollette,
1990). By the middle 1970s, these concerns led to well-designed surveys fielded for the
National Science Board that attempted to measure public knowledge of and attitudes towards
science and technology (Miller, 1983a, 1983b). These surveys show that only 10 percent of
Americans can define "molecule," and that more than half believe that humans and dinosaurs
lived on the Earth at the same time (National Science Board, 2002). Combining these factual
questions with ones about the process of science and the institutional place of science has yielded
measures of "science literacy" that show, depending on the year and the particular method of
interpretation, that only 5 percent of the American public is scientifically literate, and only 20
percent are interested and informed. The rest, by formal definition, are "residual" (National
Science Board, 1991, 1993, 1996, 1998, 2000, 2002).
Studies such as these – along with anecdotes common among the scientific community
about the public's inability to understand even basic ideas of probability, skepticism, and
evidence – have led to cries about the lack of knowledge, and then to new programs for
providing information to fill the gap of knowledge (Royal Society, 1985; National Commission
on Excellence in Education, 1983). This approach has become known as the "deficit" model,
since it describes a deficit of knowledge that must be filled, with a presumption that after fixing
the deficit, everything will be "better" (whatever that might mean) (Ziman, 1991, 1992). Vast
and important projects to address science literacy have emerged, perhaps most notably the
National Science Education Standards in the United States (American Association for the
Advancement of Science, 1993; National Research Council, 1996).
However, scholars have identified a series of difficulties with the deficit model. Most
notably, many of the questions are asked without providing a context (Wynne, 1995). In what
5
situation with personal relevance, for example, does a nonscientist need to know the definition of
DNA? Learning theory has shown that people learn best when facts and theories have meaning
in their personal lives (Bransford, National Research Council on Learning Research and
Educational Practice, 2000); for example, research has shown that in communities with water
quality problems, even people with limited education can quickly come to understand highly
complex technical information (Fessenden-Raden, Fitchen, & Heath, 1987). In addition, the
interpretation that labels many people "scientifically illiterate" or "residual," while based on good
political theory, highlights the power relationships between those with the particular knowledge
measured by the surveys and those without. There has been little attention to other forms of
knowledge that may be relevant to individuals in their real, everyday lives (Irwin & Wynne,
1996). Another critique is that, after nearly 25 years of gathering on the public understanding of
science, and after many more years of active (and often excellent) attempts to affect public
knowledge, the numbers seem remarkably stable. Approaching the problem from the perspective
of "filling the deficit" doesn't seem to have been a successful approach.
As a result of these concerns, at least three other models have been developed in response
to the deficit model: a contextual model, a lay-expertise model, and a public participation model.
These models are frameworks for understanding what "the problem" is, how to measure the
problem, and how to address the problem.
2. The Contextual Model
The contextual model acknowledges that individuals do not simply respond as empty
containers to information, but rather process information according to social and psychological
schemas that have been shaped by their previous experiences, cultural context, and personal
circumstances. One common area in which the contextual model has been applied is risk
perception and risk communication (Krimsky & Plough, 1988; National Research Council
(U.S.). Committee on Risk Perception and Communication, 1989; Slovic, 1987). The model
acknowledges that individuals receive information in particular contexts, which then shape how
they respond to that information. Personal psychological issues may affect the context, such as
stage in life or personality type (fearful, aggressive), as may the social context in which
information is received (a trusting relationship with an old friend versus a confrontational
relationship with a distrusted employer, for example). The contextual model also recognizes the
ability of social systems and media representations to either dampen or amplify public concern
about specific issues (Kasperson et al., 1988). Newer approaches to the contextual model have
attempted to use modern marketing segmentation approaches to identify populations with
differing underlying attitudes toward science, without necessarily tying those groups to particular
risk contexts or to levels of "science literacy" (Office of Science and Technology & Wellcome
Trust, 2000). At the practical level, the contextual model provides guidance for constructing
messages about science relevant to individuals in particular contexts, such as using messages
about addiction and brain structure as a vehicle for teaching reading to low-literacy adults (who
often come from personal or social settings in which drugs and addiction are common) (Baker,
1995).
The contextual model has been criticized for being merely a more sophisticated version
of the deficit model: it acknowledges that audiences are not mere empty vessels but nonetheless
6
conceptualizes a "problem" in which individuals respond to information in ways that seem
inappropriate to scientific experts (Wynne, 1995). The contextual model recognizes the presence
of social forces, but nonetheless focuses on the response of individuals to information; it
highlights the psychological component of a complex social psychological setting. The recent
use of marketing and demographic approaches has also raised concern that contextual model
research is intended as a tool for manipulation of messages to achieve particular aims; the goal
might not be "understanding" but "acquiescence."
In response to the deficit and contextual models, researchers expressed concern that
perspectives for exploring public communication of science and technology were too tied to the
interests of the scientific community, which almost by definition constitutes an elite group in
society. The deficit and contextual models often seemed to equate "public understanding of
science" with "public appreciation of the benefits provided by science to society" (Lewenstein,
1992). They did not adequately address the social and political context in which the powerful
social institutions of science use "science literacy" as a rhetorical tool to influence funding and
policy decisions (Hilgartner, 1990), sometimes in political opposition to labor or local interests.
Since the mid 1980s, these researchers have stressed the importance of recognizing local
knowledge and commitments to political inclusion and participation. From these concerns have
emerged two new models: lay expertise and public participation.
3. The Lay Expertise Model
The lay expertise model begins with local knowledge, sometimes called "lay knowledge"
or "lay expertise" (Wynne, 1989). This is knowledge based in the lives and histories of real
communities, such as detailed local farming or agricultural practices, or historical legacies such
as the cultural heritage of African Americans for whom the Tuskegee syphilis experiments are a
real antecedent to contemporary opinions about trust in scientific medicine. The lay expertise
model argues that scientists are often unreasonably certain – even arrogant – about their level of
knowledge, failing to recognize the contingencies or additional information needed to make real-
world personal or policy decisions. Basing their analyses largely on case studies (Irwin &
Wynne, 1996), proponents of a lay knowledge approach argue that communication activities
need to be structured in ways that acknowledge information and knowledge and expertise
already held by communities facing scientific and technical issues(Wynne, 1996). While ideas
about indigenous knowledge systems in developing countries have not been central to the
intellectual development of the lay expertise model, they clearly fit comfortably with that model,
as they emphasize the importance of knowledge and expertise that is held and validated by social
systems other than modern science (Ellen & Harris, 1996). However, unlike approaches to
indigenous knowledge systems that attempt to use modern science methods to verify traditional
beliefs, the lay expertise model is explicitly targeted to valuing local knowledge as expertise in
their own right (Centre for Study of Environmental Change, 2001; Grove-White, Macnaghten,
Mayer, & Wynne, 1997).
Like other models, the lay expertise knowledge is subject to criticism. In particular, it
privileges local knowledge over the reliable knowledge about the natural world produced by the
modern scientific system. For that reason, it can be called "anti-science," and certainly
proponents of local knowledge approaches have been targets of some of the virulent "science
7
wars" disputes of the 1990s (Labinger & Collins, 2001). It is clearly driven by a political
commitment to empowerment of local communities. It is also not clear how a model of public
understanding based on lay expertise provides guidance for practical activities that can enhance
public understanding of particular issues, although it does suggest that activities designed to
enhance trust among participants in a policy dispute are more important that specific educational
or informational approaches.
4. The Public Engagement Model
Finally, a "public engagement" model has emerged, focusing on a series of activities

intended to enhance public participation in science policy. These activities include consensus
conferences, citizen juries, deliberative technology assessments, science shops, deliberative
polling, and other techniques (see, for example, Hamlett, 2002), Wachelder, 2003), (International
Science Shop Network, 2003). The public participation activities are often driven by a
commitment to "democratizing" science – taking control of science from elite scientists and
politicians and giving it to public groups through some form of empowerment and political
engagement (Sclove, 1995). Not all activities envisioned by supporters of public engagement
necessarily require turning over control; in the United Kingdom, the public engagement model is
sometimes called the "dialogue" model and is intended to highlight the importance of seeking
public input into science issues, without necessarily yielding control (House of Lords, 2000; S.
Miller, 2001). Moreover, the public engagement model appears to be similar to more established
techniques such as public meetings and public hearings, although formal discussion of these
links has not taken place(McComas, 2001).
Because the public engagement model, like the lay expertise model, carries with it a
commitment to a particular stance about political relations, it can be criticized for addressing
politics, not public understanding. Proponents of public participation, however, counter that the
deficit model and contextual models are equally political, for they link the "problem" of public
understanding to individuals rather than social relations (Dornan, 1990; Jasanoff, 1997).
Still, the public engagement model can be criticized for focusing on the process of
science and not the substantive content (though some public engagement activities, especially
consensus conferences, do commit significant resources to education), for serving only small
numbers of people, and sometimes for having an "anti-science" bias.
In sum, the driving force behind these four theoretical models is different. While two of
the models thrive at delivering information to the general public or to a specific group (deficit
and contextual models), the other two are about actively engaging citizens with science (see
Figure 1). In the present project, we will test whether actual outreach can be mapped on these
models, or if other models need to be defined in order to capture the reality of practice. We will
base our discussion on a case study approach, and analyze the objectives and outcomes of
selected projects. We will therefore use the case method as a way to rebuild or improve theory,
as proposed by Burawoy and his colleagues (1991).
8
Main Focus: Information Delivery Main Focus: Engaging the Public
Contextual Model Lay Knowledge Model
Tied to particular audience(s) Acknowledges limitation of scientific information
Pays attention to needs and situations that Acknowledges potential knowledge of particular
may be time, location, disease, language,… audiences
Highlights ability of audiences to quickly Highlight interactive nature of scientific process

become knowledgeable about
relevant topics Accepts expertise away from
scientific community
Deficit Model Public Engagement Model

Linear transmission of information from Focuses on policy issues involving
experts to the public scientific and technical knowledge
Belief that good transmission of information Tied to democratic ideal of wide public
leads to reduced “deficit” in knowledge participation in policy process
Belief that reduced deficit leads to better Builds mechanisms for engaging citizens
decisions, and often better support for in active policy-making
science
Real public authority over policy
and resources
Figure 1: Conceptual Models of Public Communication of Science and Technology
9
The previous discussion will serve as the theoretical background to explore the research
questions outlined in our introduction:
RQ1: Based on our assessment on how real world outreach activities (the case studies)
accord to the theoretical models, how can these models be refined?
RQ2: Based on our case study analysis, what we can expect DOE-funded outreach
projects to accomplish -in other words what goals can reasonably be achieved by different types
of outreach?
RQ3: How can the case study approach be useful for DOE-ELSI outreach as a whole –in
other words, what are the lessons that can be retained for the present exercise?
As a preliminary step, we will provide an overview, a “map” of DOE-funded of outreach

programs within the overall ELSI context to identify the importance of the educational
component, and to present the criteria we used to select relevant and representative case studies.
The following section describes the methods used to map DOE-ELSI activities, and to analyze
the selected projects.
III Methods
1. Mapping DOE-ELSI Projects
We performed a content analysis of 1994-2000 projects’ abstracts. The 94 abstracts,

which were submitted by DOE-ELSI grantees to the Human Genome Program Contractor-
Grantee workshops in 1994, 1996, 1997, 1999 and 2000 (workshops IV to VIII), were
downloaded from DOE ELSI web page (DOE-ELSI, 2003). Our analysis focused on the 1994-
2000 period since abstracts for projects funded prior to that period were not posted online at the
time of the analysis.
The coding matrix used for the analysis of the abstracts included 4 sets of variables: (1)
the nature of the project; (2) its primary intended audience; (3) the primary public
communication of science model in which the project conceptually fits; and (4) the main
communication medium used for outreach in the project.
The “nature of the project” variable was a categorical variable that included four program
areas as possible categories. We used as program areas the ELSI Research Planning and
Evaluation Group categories (ERPEG, 2000). The categories were the following: privacy and
fair use; clinical integration; genetic research; education and resources.1 We also included an
“others” category for projects that did not fit specifically in any of the general program areas.
1
The program areas are the following (ERPEG, 1999, p. 7)
Privacy and Fair Use. To ensure that genetic information is interpreted correctly and used appropriately,
and that public policies developed to protect genetic privacy and to reduce the likelihood of genetic discrimination
are informed by ELSI research. Activities in this area examine the meaning of genetic information and how to
prevent its misinterpretation or misuse.
10
The “primary intended audience” categorical variable included youth/high school
students, college students, professional groups (excluding teachers) general, teachers, general
public, low literacy adults, minorities, and other specific audiences (non professionals), as
categories. Since the analysis was exploratory in nature, the categories were defined after reading
the sample of abstracts. In other words, no preconceived idea of what these audiences needed to
be was applied before hand.
Finally, the “communication medium” variable included workshops, curriculum materials

conferences/workshops, radio, web, radio shows, exhibits, CDRoms, printed books, magazines,
television series/documentaries, and other types of frameworks, as categories.
2. Case Study Analysis
2.1. Selection of the Case Studies
The goal was to select case studies that would match the following criteria, in support of
our research questions: (1) The target audience should be an adult population. Potential
audiences were therefore the general public, low literacy adults and minority groups;2 (2) the
case studies should allow us to discuss the 4 theoretical models of public communication of
science that were presented earlier; (3) different communication medium should be used for each
project; (4) the case studies should include only completed projects, in order to be able to
compare objectives and outcomes. The case studies were to be used as a way to improve theory,
as proposed by Burawoy and his colleagues (1991).3
2.2. Documenting the Case Studies
The goal was to analyze the case studies in relationship to the existing theoretical models
for public communication of science. We therefore looked at the goals of each project in
relationship to its content and its outcomes. Our assessment of the outcomes of the project is
Clinical Integration. To ensure that genetic technologies and information are optimally integrated in clinical
settings, and that health care policies reflect the knowledge gained from ELSI research. Activities in this area
examine the impact of genetic testing on individuals, families, and society with the aim of informing clinical
practices and policies related to genetic testing and counseling.
Genetic Research. To ensure that genetic research is conducted in an ethically sound manner, and that
research policies are informed by ELSI research and experience. Activities in this area focus on informed consent
and other issues related to the design, conduct, participation in, and reporting of genetics research.
Education and Resources. To ensure that the public and health and other professionals are genetically
literate and aware of ELSI issues related to genetic technologies and information. Activities in this area include the
development of ELSI and genetic-based curricula, web-based educational activities, PBS television series, videos,
and CD-ROMs for a wide variety of audiences.
2
Projects targeting professional groups were excluded since our goal was to discuss issues raised by public
understanding of ethical, legal and social issues related to genomics research in everyday life, i.e. outside of a
professional context
3
According to grounded theory, case studies can form the basis for the development of general theories, the
researcher approaching the case studies with no preconceived ideas of what they might encounter (Babbie, 2001;
Strauss & Corbin, 1990). Burawoy and his colleagues (1991, p. 10) take a whole different approach, using
observations to identify “theoretical gaps and silences” in existing theoretical frameworks.
11
based on a retrospective analysis of the available documentation as well as on interviews with
the project leaders. Since summative evaluation was not conducted for some of the projects, our
comments regarding the outcomes should not be taken as critiques, but rather as assessments of
how the outcomes of the projects mapped onto the theoretical models. The methods used for the
analysis are outlined below.
1. In-Depth Qualitative Interviews With Project Leaders4
We used a semi-structured interview format, in which the interviewer has a series of

specific questions to be raised during a conversation with the interviewee (Leech, 2002). No
formalized sampling methodology was applied to determine the sample of case studies, or
interviewees. We therefore do not expect to generalize conclusions reached through the
interviews to other projects, but will rather use the conclusions as a basis for discussion of
theoretical concepts.
2. Historical Review of Documents
Whenever possible, we analyzed the content of the project outreach document drafts in a
historical perspective, in order to identify if the project goals had evolved as the project went on.
We also tracked and examine evaluation research that might have been performed on the project,
and analyzed the final report submitted to DOE-ELSI officers.
3. Analysis of Web-Use
When applicable, we tracked public use of web-documents related to the project.
4. Content Analysis of Documents
We analyzed the final outreach materials used by each project to reach the target
population (book chapters; articles; conference proceedings; e-mails, etc) in order to identify
what were the themes disseminated through the project, Whenever possible (i.e. if evaluation
information was available or if some feedback mechanisms were built in the project) we
analyzed the type of response the materials covered elicited from the audience.
IV Results
A. Mapping DOE-ELSI Projects
The goal of the content analysis of the DOE-ESLI abstracts was to identify the proportion
of projects in the DOE-ELSI portfolio that could be classified as public communication of
science efforts. As explained earlier, we classified the DOE-ELSI projects under consideration in
5 categories: projects related to “privacy and fair use” issues; projects related to “clinical
4
And users whenever possible.
12
integration,” projects related to “genetic research,” educational projects, and “others). We then
analyzed more particularly the educational projects, in order to determine the type of audience
they attempted to reach, the type of communication models they followed, an the communication
medium they relied on.
In terms of type of projects, 77% of the 1994-2000 DOE-ELSI projects had an

educational component (Figure 2), which is in line with DOE-ELSI stated goal of promoting
education for genetic information related issues, and demonstrates that DOE-ELSI has indeed a
potential to impact public understanding of ethical, social and legal issues related to genomic
research.
6% 12%
2% privacy and fair use
3%
clinical integration
genetic research
education and
ressources
other
77%
Figure 2: DOE-ELSI funded projects program areas (1994-2000)
Among the educational projects, 23% were attempting to reach youth audience, and/or
specifically high school students (Figure 3). The same percentage of projects was geared toward
professional groups (excluding teachers). As far as the general public is concerned, 21.6% of the
projects were aimed at that audience. Only 2.7% of the projects analyzed targeted low literacy
adults.
13
Percentage of Total Projects
25.0
20.0
15.0
10.0
5.0
0.0
pro
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lo w
yo
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tea
mi
oth
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uth
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**
ts
* excluding teachers
** non professionals Audience
Figure 3: Audiences of DOE-ELSI Funded Projects (1994-2000)
Based on the information provided in the projects’ summaries, we identified which model
of public communication of science each educational project fit more (Figure 4).
4% 4%
deficit model
19%
contextual model
lay knowledge model
public engagement
model
73%
Figure 4: Public Communication of Science Models and DOE-ELSI Educational Projects
As Figure 4 shows, most of the projects analyzed fell in the “deficit” communication model. This
result is not surprising, since this model is the most commonly used framework for science
14
outreach projects. It is also in line with one of the stated goals of DOE-ELSI, “to ensure that the
public and health and other professionals are genetically literate and aware of ELSI issues related
to genetic technologies and information.” (ERPEG, 2000). This assumes, of course, that the
deficit approach does indeed impact levels of awareness and understanding of the targeted
audiences, which only sound summative evaluation of the projects could demonstrate.
We also identified the main communication medium that the DOE-ELSI education
projects used (see Figure 5).
Pecentage of Projects
30.0
25.0
20.0
15.0
10.0
5.0
0.0
s
ls
ag s
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tv
Main Material
Figure 5: Main Communication Medium Used by the DOE-ELSI Educational Projects
Curriculum materials and workshops were the most frequently used communication medium for
the projects analyzed. Since the main audiences for the projects were school-age populations and
professional groups, this is not surprising. A wide range of materials/frameworks was, however,
also used, the most frequently used being radio programs (12.7%), conferences (8.5%) and web-
based projects (8.5%). It should nevertheless be noted that traditional media, such as magazines
or television, were the least used communication medium. Such material would however be a
good channel for a larger uninformed public, for whom traditional media is often the only source
of information for science-related issues (Gerbner et al, 1981; LaFollette, 1990).
15
B. Case Studies
1. Selection of the Case Studies
In accordance with the results of the “mapping activities” exercise (identification of the
main audiences for the educational projects, of the main communication mediums used by the
projects, of the main public communication of science model followed by the projects), we
selected five case studies (see Table 1).
Table 1: Case Studies Selected
Case Study The Challenges of Your Genes The Hispanic A Question of

Geneletter Genome Your Choices Radio Model Genes
Research for and Science
Minority Education
Attributes Community Outreach
Project
Target Audience General Minorities, Low-literacy Hispanic General public
(*) public mainly adults community
African-
American
community
Main Web Conferences Printed book Radio Television
Communication newsletter programs documentaries
Medium
Public Diffusion Contextual Diffusion Contextual/ Lay knowledge
Communication model model model public model
of Science participation
Model* models
Project Schedule 1996-1999 2001-2002 Book 1996-1999 Aired
published in November
1999 1997
* As defined in the first abstract of the project; the target audience might have evolved
over time
** As evident in the first abstract of the project
2. Case Studies Analysis
1. A “Web-based” approach: The Geneletter
a. Presentation of the project: objectives and intended outcomes
Supported by DOE-ELSI funds from 1996 through April 1999, Geneletter intended to
reach a broad public audience by reporting on scientific, ethical, legal and social aspects of
genetics through a web-based newsletter. The idea of Phillip Reilly (Director of the Shriver
16
Center5 at that time, and co-PI of the project with Dorothy Wertz), was that whoever would use
the Internet for public education about genetics and ethics would have power over public
education. Indeed, a general search on the World Wide Web shows that newsletters focusing on
ethical, legal and social issues specifically related to genomic research are rare.6
Geneletter published 10 issues on its site at www.geneletter.org, from July 1996 to

February 1999. After that period (and ending of the DOE funding), the Geneletter was turned
over to GeneSage (a California-based Internet start-up, aimed at genetic professionals) in return
to a $20,000 donation to Shriver Center.
b. Outreach Materials
According to Dorothy Weiss, the content of the articles was defined by the editors (also
authors of the articles), the main concern being to arise interest in the readership. Conferences on
ELSI related issues were the main source of ideas as far as content of the articles was concerned.
In other words, potential users’ input was not used for content definition.
We performed a content analysis of 196 pieces published between July 1996 and
February 1999, in order to identify the main focus of each article, as well as the specific themes
it addressed.
Each issue of the Geneletter included one or more of the following type of pieces: Update
on Scholarly Conferences (5% of total pieces); Update on Community Events/Community
education/websites of interest (2.3%); Book Reviews (8%); New Article (79%); and Case Study
(5%).
“Ethical issues” were the main focus of the “new articles” for 24% of the sample, “legal
issues” for 19%; “social issues” for 28% and “scientific issues” for 25%, indicating that the
Geneletter’s content was in line with its stated objective. The table below outlines the main
themes discussed in the articles, by decreasing level of presence:7
Genetic testing, genetic counseling: present in 24% of the articles (*)

Science background on genetics: 20%
Legislation and genomics: 15.3% (*)
New research on genomics: 10.7%
Eugenics: 10.2
Cloning: 9.7% (*)
Public opinion/public perceptions: 9.2%
Privacy issues: 7.1% (*)
5
The Shriver Center was established by the UMBC (The University of Maryland, Baltimore County) in 1993.
According to its website, “The Shriver Center's diverse programs engage the strengths and resources of higher
education in finding creative solutions to some of the most troublesome social problems of our times” (see
http://www.shrivercenter.org/aboutshriver/welcome.html).
6
A number of publications do address ethics and genetics, although not through a newsletter format (see
http://home.uchicago.edu/~ebetran/ethics.html for a list of sites); the National Information Resource on Ethics and
Human Genetics (http://www.georgetown.edu/research/nrcbl/nirehg/) also provides some useful links.
7
The percentages do not add to 100 since several themes could be addressed in the same article.
17
Treatment of Human Subjects: 6.1%
Insurance related issues: 5.1%
Market related issues (new products, etc) 4.1%
Behavioral genetics: 2.6% (*)
Patenting: 2.6% (*)
Litigation related to genetics: 2.6%
Stem cell research: 2%
Gene therapy: 2% (*)
Media coverage of genetic issues: 2%
(*) DOE-ELSI research categories, as reported on the DOE-ELSI webpage.
In sum, Geneletter addressed a wide range of issues, in line with the DOE-ELSI research agenda.
c. Audience/Readership
Geneletter users were divided among company-bases users(.com-38%), network users

(.net-31%), educational institutions-based users (.edu.-26%), with fewer from organizations
(.org-4%) and government (.gov-1%).
Geneletter editors kept record of web traffic statistics. According to Geneletter final
report, the average number of hits on Geneletter webpage per day was 1857 between September
18, 1996 and October 26, 1999. The most active day was February 22, 1999 (shortly after the
eugenics issue was published), with 6904 hits. The least active day was September 21, 1996,
with 19 hits. 8 Starting with the March, 1997 issue which contained articles on the ethics of
cloning, readership shot up to an average 5000 site visits per week and remained there until the
site was transferred from the Shriver Center in October 1999. The average user session lasted 7
½ minutes.
The audience was broad, including 6th graders to graduate individuals. According to D.
Weiz, “no visible difference in knowledge was apparent between the groups, as shown by the
types of questions asked through e-mail or chatbox.”
d. Users’ Feedback/Evaluation data
Users’ feedback was made possible through two channels: a chatbox, and direct e-mails
to the editors.
The chatbox did not prove to be an effective tool for discussion; numerous technical
problems were encountered, the chatbox being hard to access. All together, 200 items were
posted in the chatbox. However, no real interactive discussion took place. In sum, as pointed out
in Geneletter final report “it appears that although people were eager to seek information from
the editors via email, comparatively few were eager to “chat” about issues related to genetics.”
8
For comparison purposes “Your Genes, Your Choices” had 2, 624 average hits per day, and “Challenges and
Impact of Human Genome Research for Minority” 398 per day.
18
Readers asked a wide variety of questions through the “Letter to the Editor” feature, i.e.
emails. The editors received over 800 inquiries through this medium. We performed a content
analysis of 177 e-mails sent to the editors.9 Out of those, 21% expressed support for the
Geneletter webpage; 12.4% addressed a theme not related to Geneletter content; 24% were
related to education (i.e. school project; course content; graduate work).The e-mails analyzed
addressed the following themes:
Genetic testing 16.4%

Scientific background on genetics 13%
Cloning 13%
Legislation 10.2%
Insurance 3.4%
Gene therapy 2.3%
Themes present in less than 2% of e-mails: Privacy issues, Treatment of Human Subjects,
Eugenics, Market related issues (new products, etc), Behavioral genetics, Litigation
related to genetics, Stem cell research, Media coverage of genetic issues, Public
opinion/public perceptions, Patenting.
Issues raised by readers were therefore in general in line with Geneletter content.
However, and as noted by D. Weiss, “readers’ queries focused on popular science issues
(cloning, Jurassic Park) rather than on ethical concerns.” Whenever possible, the editors made a
point of answering readers’ queries. Many of the e-mails, however asked very broad questions
(therefore hard to answer, according to the editors) such as “Tell me everything you know about
the Human Genome Project.” One may therefore wonder to what extent the content of the
Geneletter’s articles was appropriate for the knowledge level of a fraction of the readership.
e. Follow-up (changes after initial project ends)
The initial project ended with DOE-ELSI funding in October 1999. Geneletter resumed
its publication in February 2000, with a new editor, Paul Billing, and with financial support from
GeneSage. Geneletter had lost a lot of readership by then, but eventually got back in track.
Geneletter targeted audience shifted to primary care physicians. Articles were written by staff
and freelance writers, and format of the letter changed. According to D. Weiss, the quality of
articles varied. Sixteen issues were published between February 2000 and May 2001 (one a
month). The project went out of funds in January 2001, and the last 4 issues re-used previously
used material.
D. Weitz did want to insure the continuation of the project as it was initially set up (i.e.
geared toward a broad audience, but was unsuccessful at getting Geneletter back to the Shriver
Center, Since she believes that there is a real need for this type of publication, she started a new
collaboration with the University of Montreal. Although the readership of the new publication
9
We used a convenient (i.e. not random) sample of e-mails that were kept by the project P.I. The goal was to get a
general sense of the type of issues addressed by the readership, in relationship to the content of the outreach
documents.
19
might be smaller than the Geneletter one (emphasis will be more on legal issues) the site will
provide information on ethical and legal issues.
f. Outcomes of the Project
According to our analysis, the project’s content was in line with its objectives, and the
Geneletter was reaching the intended audience. Engagement of the readers was however limited,
the chatbox not generating discussions. However, the project objectives evolved when it was
turned over to private investors, therefore jeopardizing to some extent its potential impact on
public understanding of ethical and legal issues related to genomics.
g. Case Study in Relationship With the Theoretical Models
Geneletter essentially followed the Deficit model. As we explained earlier on, this model
focuses on increasing public understanding of scientific issues, and on increasing levels of
scientific literacy among the general public. Projects that follow this model aim principally at
filling the gap of scientific knowledge of a broad public by providing accurate information a-
priori defined by experts. Geneletter’s general objective and organization were in line with this
theoretical framework. Geneletter aimed at increasing public understanding of ethical, legal, and
social issues related to genomics, the editors defining the themes to be covered and addressing a
broad range of ethical, legal and social issues related to genomics research. No specific audience
was targeted, the editors aiming at reaching all interested individuals.
This approach seemed to be successful: (1) readership of the newsletter was broad, and
included 6th graders to graduate individuals; (2) the site had 5000 site visits per week (after
March 1997), the average user session lasting 7 ½ minutes, a reasonably high number for a
specialized newsletter [ADD REF]; (3) the themes raised by the readership in the “Letters to The
Editor” were in line with the content of the articles posted on line, which shows that indeed, the
audience was eager to learn more about the issues covered. It is difficult to assess, however, what
was the impact of the newsletter on the rest of the readership (i.e. that did not communicate
through e-mails with the editors) since no evaluation data addressing that question was available.
Also, the question of what level of information should be provided to a targeted audience, i.e.
what readers actually need to know, is apparent from the analysis of the project. As the PI of the
project pointed out, the e-mails often raised very broad questions that were hard to answer. Some
of the readers may therefore have found the content of the newsletter too sophisticated for their
level of knowledge.
Although Geneletter fits in the Deficit Model of public communication of science, it

cannot be criticized for providing information out of context, which has been one of the main
criticisms of the deficit model. Most of the articles (and particularly the “case study” format used
to address some in the ethical issues) used a framework that made the information provided clear
and easy to understand, and that made it as relevant as possible to readers’ lives. In other words,
Geneletter had some characteristics that are usually not found in Deficit approaches and that are
more in line with the Contextual Model of public communication of science.
20
Another feature of the project shows that the Deficit Model cannot fully fit the
Geneletter. Some interaction between project leaders and readership did take place through e-
mails, which demonstrate that the project did, to some extent, engage citizens with science.
Although we do not know to what extent this did spark public participation in decisions related
to scientific issues, it does demonstrate that there might be an overlap between the Deficit model
and the Public Engagement model. It also points out the necessity to define more precisely what
academics mean by “engagement with science” which can range from sparking interest among
the public, to engaging citizens in decision-making procedures related to science. Such
definitions are clearly needed if project leaders want to include sound evaluation plans (linking
objectives to outcomes) in their projects.
In sum, the analysis of the Geneletter shows that the Deficit Model does not fully capture
the reality of this type of outreach. A project that, at first glance, might have appeared as a
traditional deficit approach had characteristics that made it fit in several theoretical models.
2. A “Workshop Based Approach:” the Human Genome Project Information Conference,

The Challenges and Impact of Human Genome Research for Minority
Communities”
a. Presentation of the Project: Objectives and Intended Outcomes
The National Educational Foundation of Zeta Phi Beta Sorority, Inc. received support
from DOE-ELSI to sponsor information conferences on the Human Genome Project for minority
communities (the sorority has adopted the Human Genome Project as a national project, and has
put an emphasis on providing related information to its chapters’ communities members). Five
major conferences took place in the following locations: New Orleans (in 1999), two conferences
in Philadelphia and one in Atlanta (in 2000) and Washington D.C. (in 2001). DOE funding has
been the backbone for the project and has helped set up the conference concept. The Foundation
got support from DOE-ELSI for the New Orleans, the Atlanta and the Philadelphia conferences.
The conferences broadly aimed at involving minorities members with science and genetics. The
goals were to provide minority community members with information about the Human Genome
Project and to find out what were minorities’ concerns related to current genomic research, in
order to provide feedback to the funding agency. They also aimed at getting minority college
students interested in the areas of genetics, biotechnology and related science. In sum, as
specified in the final report of the July 7-8 Philadelphia Conference, the conference goal was:
“ to raise the level of awareness, in minority communities, of the rapid strides being made
in human genome research and the background of the HGP, its potential and value to
minorities, particularly in the area of health care; to identify issues that are important to
the minority community and avenues for more involvement of this community; to explore
post-conference ways of continuing input from and update of minorities.”
We will focus our analysis on the Philadelphia (July 7-8, 2000) conference, which was
funded by DOE-ELSI. Leaders of the conference were Issie L. Jenkins, Esq, Zeta Foundation
21
chair and Dr. Malvern, Conference Project Director. A planning committee composed of Issie
Jenkins, Kathryn Malvern, Audrey Thorton (Community Coordinator), and Barbara Henderson
(Advisory Council member) developed the program for the conference. An Advisory Council
(always the first entity to be set up) provided advice on program development and was in charge
of disseminating the information to the communities. The Advisory Council (also called the
committee advisory group) was composed of around 25 representatives from minority
organizations, from governmental agencies, health organizations, churches and educational
institutions, in other words of “people that knew the community” (Jenkins, 2002). According to
Issie Jenkins “the committee advisory groups have been very instrumental in identifying people
in that community who could be a part of the program … and in raising questions that may be of
interest to them so that [they] may be included in the program.” According to Dr Malvern, the
Advisory Council was also instrumental in getting community members to attend the conference.
Dr. Malvern pointed out that community leaders, such as ministers, can encourage the attendance
of individuals that might otherwise be left out of the process.
The conference combined experts’ presentations and panel discussions, workshops and
public discussions. In addition, copies of the book “Your Genes Your Choices” and handouts
(both provided by DOE), were made available to the conference participants. Organizers thrived
at creating a very mixed group of presenters (researchers, DEO representatives, private
researchers, sociologists, anthropologists, educators). The goal of the presentations was to first
provide a general scientific background (on genes, proteins, …) to the conference attendees, in
order to make the presentation of the Human Genome project, of its potential benefits and of its
ethical, legal and social implications, easier to understand for the audience. The main presenters
(and the topics they covered) were the following:
- Dr. Ari Patrinos, Associate Director, Health and Environmental Research at DOE
(History and accomplishments of the HGP);
- Dr. John Quackenbush, The Institute for Genomic Research (Genes and genomes:
Decoding the book of life);
- Dr. Karen Nelson, The Institute for Genomic Research (The benefits of genetic
research in improving health and health care).
- Panel discussion on implications of HGP for minority health issues: Dr. Georgia
Dunston and Dr. Robert Murray (Howard University Medical School);
- Dr. Mary Kay Pelias, Louisiana State University Medical School (Genetic problems
in clinical practice and biomedical research);
- Dr. Fatimah Jackson, Anthropologist, University of Maryland (Scientific and folk
ideas about heredity);
- Dr. Chris Adams, Mosiac Technologies (Private industry and its role in the biological
revolution)
- Panel discussion on ELSI of HGP for minorities: Phyllis Epps, Esq, Health, Law and
Policy Center, University of Law Center; Dr. Jennifer Smith, FBI Laboratory, DNA
analysis unit; Dr. Jeroo S. Kotval, School of Public Health, New York State
University; Dr. Pamela Sankar, Center of Bioethics, University of Pennsylvania;
Moderator: Issie Jenkins, Esq., The Shelton Group.
22
In addition, workshops covered the following topics, and aimed at producing a list of
concerns and associated recommendations, related to minorities and genetics:
- Genetic screening, testing and counseling: Issues of importance to the minority

communities;
- Expanding the pool of minority scientists; Genomics and its challenge in the
education of minorities;
- Minorities in the scientific workforce; Career development;
The Reverend Dr. Deborah Wolfe, a conference panelist, produced 14 questions for
which she requested answers at the conference. As she put it : “since, as you know, I did not
participate in bringing about this great discovery [the genetic code] and since I really know so
little about the details of the study, all I can do as a teacher, as a preacher, as an interested citizen
is to raise questions to you who are specialists.” The conference was therefore not only a setting
for experts to disseminate their knowledge, but also for lay individuals to formally participate.
In sum, the experts’ presentations and discussions were balanced as far as scientific
versus ethical, legal and social issues are concerned, and raised questions that were of interest to
the audience, as the evaluation data demonstrated (see next section).
The conference proceedings were posted online on the DOE ELSI webpage (at
http://www.ornl.gov/hgmis/publicat/zetaphibeta).
Since there was hardly any newspaper, television or radio coverage prior to the
conference, advertisement for the conference was restricted to the organizers’ flyers and
mailings. The organizers directly reached out to the members of the community by speaking to
organizations to let them know about the conference, and by providing them with materials and
registration forms to give to their members.
As we mentioned earlier, the conference organizers made a point of encouraging

attendance by minority communities through the Advisory Council. Dr. Melvern, for example,
reported the following story:
“So I was telling you the story about the judge in PA, she said, “Dr. Melvern, you are not
going to get the Chinese community this time, because they are all focused on
Chinatown.” [The judge] said, “I will be the conduit,” and she was for what was
happening, and she would be part of whatever happened later. She was there at the
conference, she had all the material…. So I am saying, you must have a true leader, she
has kept that community involved.”
Each day, the conference was attended by 250 individuals representing among others,
minority organizations, civic groups, religious groups, leaders in health communication, local
government officials and students. Roughly 3/4 of the audience was composed of African
Americans.
23
d. Users’ Feedback/Evaluation Data
Users’ feedback from previous conferences was used by the organizers to define the
framework of the 2000 conference. More specifically, as suggested by 1999 conference
attendees, more time was reserved for public discussion during the 2000 conference.
The participants to the Philadelphia 2000 conference were asked to fill out surveys at the
end of the conference and workshops. Descriptive statistics related to the survey data was
included in the conference final report for DOE. We report the most relevant findings in this
section:
- 55 attendees requested to serve as future Community Liaison Coordinators, and

signed up to be trained as such.
- 83 attendees filled the survey and provided self-reports in the following areas:
o Usefulness of the conference: 88% felt the conference was very successful in
imparting useful information to members of their groups (8.4% somewhat
useful; 2.4% don’t know)
o Knowledge gain:
¾ 67.5% learned a great deal about the science being done on the HGP
(25% a little)
¾ 56.3% learned a great deal about the ethical implications of the HGP
(35% a little);
¾ 55.8% learned a great deal about the potential harmful effects of the
HGP for minority groups (34% a little);
¾ 55.1% learned a great deal about the social implications of the HGP
(29% a little);
¾ 53.8% learned a great deal about the potential benefits of the HGP for
minority groups (35% a little);
¾ 43% learned a great deal about the legal aspects of the HGP (30% a
little)
o Attitudes toward the potential effects of the HGP:
¾ 48.7% felt that the benefits would be greater than the harmful effects;
¾ 15.4% felt the harmful effects would be greater than the benefits;
¾ 35.9% did not know.
o Concerns for racial/ethnic community:
¾ 80.8% concerned about the availability of genetic information to
employers;
¾ 79.7% concerned about the availability of genetic information to
insurers;
¾ 78.9% concerned that HGP benefits would be available only to
privileged groups;
¾ 78.9% concerned by potential program development using genetic
information to alleviate crime, alcoholism and poverty.
24
The conference seemed therefore to have achieved the goal of informing its audience and
raising awareness of the potential benefits and harmful effects of the HGP for minority
communities. However, the percentages reported above should be interpreted with caution, since
only 33% of the attendees (assuming that the same 250 people attended the conference every
day) filled in the evaluation survey.
Using the web as a resource for potential dissemination of the conference proceedings
had a limited success. As of 4/30/2002 (i.e. almost 2 years after the conference), the site had had
only 2,021 visitor sessions (of these, 932 individuals visited the site once). The average visitor
session length was, however, somewhat long (23 minutes).
e. Follow-up
Initiatives for 2000-2001 were developed at the end of the conference. They included the
future selection and training of Community liaison coordinators, informational and training
sessions for Zeta Phi Beta Sorority Regional Directors, State Directors and Chapters. As
mentioned earlier, 55 attendees were interested in being future Community Liaison Coordinators,
and signed up to be trained as such in the Philadelphia area. Training classes were to be
organized by the Foundation, training materials including stated objectives, written lesson plans
and training videos. Conference follow-up plans included grant writing to support the training
program.
Plans were also made to organize additional conferences, particularly in Chicago (2-day
conference) and in the West. Several mini conferences were also coming up at the time of our
interviews, a mini conference was going to take place in Norfolk Virginia (part of the last DOE
grant had funding for 10 mini conferences).10 Finally, a conference was to be organized in DC in
2001 (the funding coming from other sources than DOE).11
The project did succeed in initiating the propagation of HGP related information to
minority communities, way beyond the conference itself. The fact that 55 of the conference
attendees signed up to become community liaison coordinators demonstrates that the conference
motivated some individuals to reach out to their communities, which was ultimately the goal of
the conference. As Dr. Malvern puts it, “we need to give [the conference participants] enough
knowledge and enough training so that they can go out and give the same information to their
own constituencies.” The conference was therefore only one component of a more complex
outreach process. The conference was the location where different possible community liaisons
were identified. After training, the community liaisons were supposed to be able to disseminate
the information in their community. Through the chapters of the sororities, smaller conferences
were to be organized, in order to reach as many individuals as possible. We do not have data,
however, on the success of the informational process that was initiated by the conference.
10
The mini-conferences are organized in towns the Foundation would have more difficulty to reach, such as the
ones situated in rural areas (for example, a mini-conference was organized in Arkansas for farmers).
11
http://www.tech-res-intl.com/hgp/.
25
g. Case study in Relationship With the Theoretical Models
The project broadly followed the “contextual model” of public communication of

science. As we have explained in an earlier section, according to this model, researchers identify
populations that might have different underlying attitudes and concerns related to genomics
research without necessarily tying those groups to particular risk contexts or to levels of "science
literacy." Outreach projects are then built in a way that is relevant to these audiences. The
conference focused on minority needs and concerns. What is particularly interesting is that the
conference was used as a setting not only for the dissemination of relevant information, but also
to find out the characteristics of the particular context at play. For instance, the reverend Dr.
Deborah Wolfe, a conference panelist, produced 14 questions for which she requested answers at
the conference. As she put it : “since, as you know, I did not participate in bringing about this
great discovery [the genetic code] and since I really know so little about the details of the study,
all I can do as a teacher, as a preacher, as an interested citizen is to raise questions to you who
are specialists. The meetings with the community liaisons were also a place where specific
minority concerns could be identified. Dr. Malvern synthesized this point in the following way:
“You see, we don’t necessarily know all minority issues. Take for instance the Hispanics,
their morals and culture can be different and when we think in terms of something that
happens in the community, we could think that it is negative when for them it is a
positive thing. Therefore it is important to get their leaders involved, so that we can more
easily understand [the context] and get into those communities.”
Philadelphia Conference organizers and community liaisons did share the goal of
providing useful information to their community through outreach. But as one of the community
liaisons put it “the challenge was that people [had] a different interpretation of outreach.
Everybody was going towards a goal, but using different ways to get there.” (Lieu, State of the
Arts, Health communication). In other words, coordinating these different conceptualizations of
outreach might be a challenge, even within the conceptual model of public communication of
science.
Finally, the project also somewhat followed the deficit model, by providing background
knowledge a-priori defined by experts. The goal was to help the audience grasp the basic
scientific content needed to be able to constructively discuss ethical, legal, and social issues
related to genomic research and its applications. This raises the following question: Can the
contextual model stand out without a “deficit” type of approach as a backbone? It seems difficult
to conceive that that could be the case. Even if an outreach project is designed in order to answer
the needs of a specific audience, as it was clearly the case here, providing background
information will be a mandatory first step, if the communicators want to bring the audience to a
shared level of basic knowledge.
26
3. A “Printed Book” Approach: Your Genes Your Choices (YGYC)
In 1995, the American Association for the Advancement of Science (AAAS) Directorate
for Education and Human Resources received funding from DOE-ELSI to conduct an outreach
effort on the Human Genome Project. The project was part of the “Science + Literacy for
Health” initiative. The project objectives were the following (AAAS, 2003)
“- to develop new adult literacy materials on the Human Genome Project--a book,
teacher's guide, and a resource database on the Internet;
- to help low-literate adults acquire the factual content base they need to understand the
ethical, legal, and social implications of the Human Genome Project; and
- to develop and conduct an outreach campaign to disseminate project materials to U.S.
libraries and community organizations.”
According to a mid-1995 AAAS progress report, recent literacy surveys had found that a
large number of adults lacked skills to bring meaning to much of what was written about science,
which denied them access to vital information about their health and well-being. AAAS therefore
wanted to use its existing network of adult education providers and volunteer science and health
professionals to develop a high-interest reading book and accompanying curriculum. In other
words YGYC was originally conceived as an “adult literacy tool”, for a GED market. The initial
objective of the project was therefore to educate the general public by conceiving materials at
lower reading and conceptual levels, which would make them more accessible to everyone.
Introducing the science as a relevant element to help understand the nature of the issue would
also provide a means of elevating science, for it to become an essential part of the way people
form an opinion about the ELS issues.
“Your Genes, Your Choices,” an illustrated book, was to describe the HGP, the science
behind it, and the ethical, legal and social issues involved. Its initial intended audience was to be
adults with 6th to 8th grade reading skills. The book was to provide “contexts and definitions for
most science information and concrete language, examples, and illustrations to support abstract
concepts.” It was also supposed to provide real-life situations the readers would be able to relate
to. The goal was to give just the amount of science that was necessary for readers to be able to
understand the ELS issues related to genomics. Although lower-level education had previously
been done at the community level, this was to be a national initiative. The goal of having the
least amount of science necessary for understanding ELS issues, and of keeping scientific
information provided at a very basic level was to be a challenge, since scientific issues
surrounding HGP were many and complex. Keeping simplicity as a goal was however important
for several reasons:
27
- the objective of the book was to address the ethical, and not the scientific issues
related to HGP;
- the limited length of the book would not allow for excessive information given that
most basic concepts will have to be explained;
- “Less is more” when teaching science. Too much science would overwhelm the
reader;
- Emphasizing relevance of science over science itself might lead readers to interest in
science;
Project managers could also safely assume that all adults have had some direct or indirect
experience with ELS issues – which would provide a context with which to explore issues
related to HGP. Catherine Baker, the author of the book and a “plain-language” writer, said that
she defined the “complexity level” of the book simply by writing it as easily as she could, though
she admitted using words or terms that she once would have considered too complicated. She
also pointed out that although people did not need to know much science to understand the issue
one of the major goals of the book was, however, also to give that science background, in order
to make sure the audience understood the ELSI points.
Early evaluation work was performed to determine the content of the book. In particular,
a focus group was conducted in May 1995 amongst low-literacy adults. The participants were
asked what they would like to know about genes. The responses were the following:
- Where genes were located;

- Know more about how genes work; what they do;
- Know how genes can be damaged;
- Know how many genes there are in human body; their size;
- If every person has the same number of genes;
Participants were asked to read the list of proposed book chapter topics and to indicate if these
were topics they would like to know more about. Participants were also asked to read the first
two pages of the introductory chapter of the first draft – they felt material was not too difficult.
Some participants suggested pronunciation guidance in the text for difficult words as well as a
glossary. Overall, the participants liked the tone and felt that this was a book they would like to
read. Participants, after being given a 2-page “future story” that was taken from the first chapter,
indicated interest in learning more. They suggested to “keep up the good work” and agreed that
the material was interesting. They also suggested “having a lot of examples” and “more details.”
In sum, most of the comments of the initial focus group participants were taken into account for
later drafts of the book.
A focus group performed in 1996 aimed at understanding the interests of the audience,
and asked questions such as: “What would you like to know more about in terms of genetics?”
and “Who should make decisions (about how genetic information should be used)?”Additionally,
4 workshops were held in 4 sites, with the help of genetic counselors as facilitators.
28
The initial draft of the book was reviewed by members of the advisory panel who were
experts in the fields of genetics and genetic counseling, plus other experts selected by the AAAS
project director. Comments and concerns of reviewers were compiled in writing by evaluation
consultants and communicated to the author. In other words, at least 10 people reviewed the first
draft. Later on, two reviewers (Dan Drell and Robert Cook-Deegan, a published author of
academic science) worked with the author one-on-one.
The final draft of the book (93-pages) uses an interesting format: each chapter starts with
a personified anecdote, presenting an individual in a “real-life” situation, and ends by asking the
reader to take a stand on the issue at play, or how (s)he would react in the same situation. The
“real life” situation is then used as a backbone to present basic scientific facts about genetics.
However, the level of scientific information might be more complex than what was initially
intended. The author pointed out that as she learned more about the science, she included more
advanced ideas than she normally would have, and that genetic professionals tended to
emphasize the need to include more science
Professionals involved in the drafting of the book included:
- Catherine Baker – Author, YGYC, Plain Language Writer

- Maria Sosa – Science Literacy Trainer and Editor-in-Chief of Science Books and
Films, Directorate for Education and HR programs, AAAS
- Shirley Malcom – Head, Directorate for Education and HR Programs, AAAS
- Jim Miller – Senior Program Assoc, Program of Dialogue on Science, Ethics and
Religion, AAAS
- Dan Drell – Program officer at DOE
- Olivia Masih White – A geneticist at U of Northern TX
- Marcia Harrington – DC public library
- Carol Osgood – The Learning Bank
- Tracy Gath – Literacy tutor
As far as content is concerned, the book broadly covers ELSI issues related to genomics, and
more particularly the following topics:
- genetic testing and its implications;

- genetic counseling;
- discrimination based on genes;
- prenatal testing and its implications;
- reproductive technology and its implications;
- DNA and privacy issues;
- biotechnology farming and its implications;
- germ-line therapy, genetic engineered medicine;
- eugenics;
- cloning.
29
As of June 2000, 8,000 copies of the book had been printed. Books had been handed out
to judges, conferees, congressional staff, and others. A Google search for “Your Genes, Your
Choices performed at the same time retrieved more than 200 links (w/o errors). Additional data
shows that 6000 people had visited the website where the book was posted, 5000 returning to the
site.
In 2002, Jim Miller (Senior Program Associate, AAAS Dialogue on Science) pointed out
that he had distributed the book to a significant number of religious education leaders. Dr. Olivia
White (Geneticist at the University of Northern Texas) used hundreds of copies as background
resources for workshops with clergy. Clergy members have remarked on its potential to stimulate
discussion within congregations.
A new Web search conducted on 10/23/02 for “Your Genes, Your Choices” produced
53,000 different links. Some were repetitive and others unrelated, but current use varied from a
resource for educators (K12 to the university level) to resources for genetic counselors.
• 568 Links for “Your Genes, Your Choices and K12”

• 6,100 Links for “Your Genes, Your Choices and genetic screening”
• 5,150 Links for “Your Genes, Your Choices and Teacher Resources
Additionally, the book is also often used as a resource in undergraduate courses in bioethics, as
show links to a large number of syllabi.
As far as web-use, HGMIS provided the following data: as for April 30, 2002, the online
version of the book had had 11,652 visitor sessions, 6,198 being unique visitors. The average
visitor session length was 7 minutes and 39 seconds.
No summative evaluation was performed for the final draft of the book, although the
book’s author admitted it would have been useful. However, Catherine Baker did give anecdotal
accounts of people who had read the book and had liked it, although some pointing out that they
didn’t necessarily learn more about “genes.” Dr Malvern, Director of the Philadelphia
Conference that we presented earlier on, used the book as an additional resource for the
conference participants and commented: “Your Genes, Your Choices? People will kill for those
little books!”
e. Follow-up
An additional chapter on Human Cloning was added to the 2nd addition (chapter 8). This
was made possible through supplemental funding. Additionally, Dan Drell (DOE) suggested
putting the book on CD-ROM format. He also pointed out that the book could be used as a
model for a behavioral genetics publication (this new project was in process at the time of the
interviews).
30
As far as readership is concerned and as assessed by the large number of web-sites

referring to the book, the project was a success. The book will also have an international reach. A
Spanish translation of the book had just been approved at the time of our interviews (the
translation been very loyal to the original text) and an Icelandic translation was under discussion.
Although widely distributed, the book did not reach the originally intended audience,
which was a low-literacy adult group. A generational gap in the interest in the book was also
pointed out, younger people seeming more likely to take an interest in the book than the elderly
population. However, the book did generate wide interest and was used by a wide variety of
audience in different setting (congregations; college classes, etc…).
g. Case Study in Relationship With the Theoretical Models
The project associated to the development and distribution of the book “Your Genes
Your Genes” followed the traditional “Deficit Model” approach to public communication of
science. As we have pointed out earlier, this model is the most widely used in the context of
science-related outreach. Interestingly, however, the book aims at encouraging readers to seek
additional information. In other words, the book is supposed to be the starting point of a self-
administered educational program on genetics. Notably, in the last chapter of the book, the
author writes that “[readers] have made a choice to gain some control of genetic issues by
reading this book. Now [they] have the choice to remain informed.”12 Encouraging self-
education is clearly going beyond a purely “deficit model” approach since it actively promotes
the engagement of the readers with the issue at hand. We have also discussed how the book was
widely used as basis of discussion in settings such as religious congregations or college
classrooms. The book was therefore actively promoting public engagement with science, and a
critical approach to ELSI related to genomics. In other words, in the context of YGYC, the
“deficit” approach shows some overlap with the “engagement” model, if engagement is
conceptualized as “empowerment” of the readers.
A number of additional observations can be made. First, although the book’s creators
emphasized that the focus of the book would be on ELSI and not on science, it is unclear, upon
reading the book, what the real focus is. Even some of the individuals affiliated with the project
(i.e. Jim Miller) felt that the main goal of the book was to educate readers about science. This
again brings up several points that we have discussed earlier on. What does the public need to
know as far as science is concerned in order to be able to understand ethical, legal and social
issues related to scientific advancements? Is it possible to define a common bottom line that
would be applicable to a broad population, and if yes, by which means should that be defined?
12
This would have been an excellent opportunity to provide readers with resources that would continue to further
their knowledge, maybe through a list of useful web links. The “taking control of the issue” terms, which are a
powerful rhetorical tool, could also have been stressed out at the beginning of the book.
31
Second, we mentioned that no summative evaluation of the project had been performed,
although the project leaders stressed the importance of such an evaluation. One of the reasons for
such a lack of evaluation might the fact that it wasn’t included in the initial grant proposal, and
therefore no funds were available later on for that purpose. Evaluation data could have helped us
assess with more detail how the book promoted readers’ empowerment.
4. A “Multiple” Approach: A Question of Genes -- If Your Could Read Your Life Story . . .
Would You Want to Know How it Ends?
On September 16, 1997, a special program titled “A Question of Genes: Inherited Risks”
was aired on public television nationally. The program had been developed with funds from
DOE-ELSI. Through case studies, the documentary aimed at exploring the drama, social and
ethical dilemma raised by genetic testing, and at appealing to a broad audience. The general
philosophy of the documentary was “to tell what the technology means, not what it does.”
(Schwerin).
The project was developed at the initiative of the filmmaker, Noel Schwerin, who had
worked previously on science-related documentaries (for programs such as NOVA in particular).
The filmmaker performed all the background research necessary for the program. The filmmaker
then brought the project to an executive producer, Angier Production, to work on a proposal to
be submitted to DOE.
Two types of outreach materials were developed in the context of the project: First, the
documentary that was aired on national television, and second, a website that was developed
concurrently provided additional information and links relevant to the topic at hand.
The documentary provided a series of 7 profiles, or case studies, of people “like you and
me” that had had to deal with issued related to genetic testing in the course of their life. The
people were the ones directing telling the stories– there was no narrator. In some cases, the
individual recounted his/her experience and provides necessary scientific information. In others,
a doctor or expert was providing relevant background. As a general rule, the filmmaker wanted
people to directly share their personal experiences. As Noel Schwerin put it: “I believe that they
are the experts… They had the real data”. This was also a way to engage the audience as they
were to sympathize with the “real-life” narrators. The 7 profiles presented in the documentary
were given equal weight, although they did not all present the same point of view. The goal was
to get the audience to think about the issue, and to realize the dilemma that such situations might
pose as far as ethical considerations are concerned, while presenting only the science that was
needed to understand the case study. Noel Schwerin pointed out that it was often “tricky to give
just enough information as not to get confused.” In some instances, additional information was
provided at the end of the case study, through a scroll-down text.
32
The 7 case studies were also presented (and still are) on the website related to the project
(www.pbs.org/gene/), which was an important component of the outreach project since it gave
the opportunity for interested viewers to find out more about the issues at hand. Video clips with
audio were posted for each case study – users could also read transcripts of the scripts. Each case
study was also accompanied by a link to an Educator’s Guide specific to that topic, as well as
links to a discussion forum (users could post comments and questions to the discussion forum
from September 16th to October 13th, 1997. During this time users were able to interact with a
panel of participants from the TV program which included physicians, patients and researchers).
It is, of course, hard to assess the size of the audience that did see the program when it
was aired on national television, although it did have the potential to reach millions of
individuals. It seems reasonable to assume, however, that the audience that was reached was the
typical audience for such TV shows broadcasted on PBS, i.e. an educated, interested in science,
public.
As far as the educator’s guides are concerned (provided through the website), they were
distributed to 66,000 professionals in the fields of genetics, ethics, biology, public health and
related fields. Results from a bounced back-survey card (223 responses) provided with the
educator guide indicated that 63% of the respondents were professors or teachers.
Additionally, the website had 40,000 hits in its first 3 months, a very high traffic for such a
show.13
Users had the opportunity to participate in an on-line survey evaluating the web-site. It
also asked whether or not visitors to the web-site had seen the program – or were reaching the
web-site independently, and how users found out about the web-site. Questions were both
multiple-choice and had spaces for open-ended comment. However, only 22 people filled in that
survey.
Some evaluation of the TV program was provided through the bounce-back survey cards
and through phone interviews with a sample of the people that had been provided with the
education guide (94 interviews). Respondents, overall, gave very positive feedback on “A
Question of Genes,” 92% of the respondents indicating that the program was excellent. More
than 85% of the respondents indicated that they had or would use “A Question of Genes” as an
educational resource; 92% videotaped the program for future use, 80% saying that they would
recommend it as viewing to their students.14
13
This data is presented in the executive summary prepared by Media Management Services, Inc. (January 9, 1998)
for Oregon Public Broadcasting.
14
See footnote 12.
33
e. Outcomes of the Project
The timing for the project was perfect for the format used for the program. Since media
coverage about these issues was still minimal, people were more genuine and more eager to
share their experiences. According to Noel Schwerin, “it was an amazing opportunity to find out
how people felt about these issues.” However, Noel pointed out that this would be more difficult
nowadays, since people have more the feeling that this type of information is powerful and
would be less eager to expose their private feelings.
As shown by the evaluation data and the press coverage, “A Question of Genes” was a
highly successful documentary that obtained several awards. Not only was the documentary used
as a TV program and discussed through the website. Anecdotal evidence shows that it is also
used in high school settings and other educational settings. The use of the film is sustained, the
video being on back order at the Oregon Broadcasting. Noel Schwerin was invited to talk about
the film at Berkley and Stanford, and a screening of pieces of the film shown at a meeting of the
American Association of the Advancement of Science, for an audience of bioethicists
Six years after the documentary was aired, the website still has hits, the main reason
being, perhaps, that it is maintained through the web site of PBS, and featured as a teacher
resource.
f. Case Study in Relationship With the Theoretical Models
“A Question of Genes” exemplifies how the “lay knowledge model” for public
communication of science can be used in an outreach setting. As we discussed in Chapter II
proponents of a lay knowledge approach argue that communication activities need to be
structured in ways that acknowledge information, knowledge and expertise already held by
communities, or individuals, facing scientific and technical issues. Although this model has often
encountered critiques within the scholarly communities dealing for public communication of
science, this case study demonstrates that it might be a good way to approach issues that do have
high relevance for people’s life, and that might provoke strong feelings. In other words, as Noel
Schwerin argued, having “real people” explain how they dealt with genetic counseling will
explain “what the technology means, not what it does.” If this is the goal of the outreach, a “lay
knowledge” approach might be the way to go.
The case study also reveals some overlaps between the theoretical models we presented
in Chapter II, by fostering engagement of the participants with science. The TV program led the
viewers to go to the website, and to get the educators guide in order to use it in other type of
settings. In other words, the “lay knowledge” model did show some overlap with the “public
engagement” model. The project also provides the scientific information necessary for the
audience to be able to understand the case studies. In that sense it does share some of the
characteristics usually attributed to the “deficit model” of public communication of science.
Finally, the project displayed some characteristics of the contextual model, in that it did
pay attention to the needs of particular audiences, the people for whom genetic counseling might
particularly relevant. By emphasizing what the technology meant and what it did, i.e. by focusing
34
on attitudes rather than on knowledge, the project clearly did not stay at the “deficit model”
level.
In sum, this case study demonstrates again that theoretical views of public
communication of science do not capture the reality of the field work.
5. A “Radio-Program” approach: The Hispanic Episodes
In 1998, the Self Reliance Foundation (SRF)15 got 3-years funding from DOE-ELSI to
develop a series of radio shows focusing on the HGP and its scientific, medical and ELSI
implications, as well as complementary outreach projects. The shows were to be broadcasted on
the Hispanic Radio Network (a Spanish-speaking radio network), the purpose being to “help
inform the Spanish-speaking population in the US about the HGP and its ELSI implications, and
motivate them to access the resources available for further education and information on these
issues.”
1. Radio Programs
From February 1998 to February 2000, the project developed more than 75 brief (1-2
minutes) radio programs, that were broadcasted on 3 radio shows of the Hispanic Radio
Network:
- 30 programs through “Fuente de Salud” (carried by 36 station affiliates),

- 10 programs though “ Planeta Azul” (carried by 96 station affiliates),
- 10 programs through “Saber is Poder” (carried by 31 station affiliates).
These programs covered the following themes:
- Utilizing Hispanic individuals involved in aspects of Genome Research and its

implications,
- Economic implications of Genome Science,
- Bio industry involvement in the genetic revolution,
- Encouraging Hispanic students to pursue science and biotechnology as a career.
The project also developed 3 hour-long shows for the radio talk show “Mundo 2000”
(carried by 17 affiliates), in which Spanish-speaking experts in genetics discussed a number of
issues, and answered audience questions.
15
The SRF is a non-profit organization, which mission is to linking Hispanics in the US with informational
resources.
35
2. Newspaper Column
The project used the syndicated newspaper column “la Columna Vertebral” to provide
information about genomics and its implications. “La Columna Vertebral” is syndicated in 82
Spanish language newspapers.
3. Toll-Free number
An 800-telephone number was listed at the end of the radio programs. A bilingual
operator would answer the call, and use a database of over 15,000 local organizations, ranging
from health clinics to science museums, to provide additional referral information. The goal of
the 800 number was to link people up with information or systems related to what was needed.
Although no data is available as far as the specific shows in which DOE-funded programs
were broadcasted are concerned, general information about the syndicated programs is available:
“Fuente de Salud” reaches an estimated 48.9% of the Hispanic population of the US, “Planeta
Azul” 86.4%, “Saber es Poder” 46.2% and “Mundo 2000” 20.9%. In addition, the combined
circulation of “La Columna Vertebral” is 2.5 million readers.
As explained earlier, a toll-free “Hispanic Community Resource Hotline” telephone

number is set up at the Self-Reliance Foundation. Interesting data should be available through
that channel, since the number of calls, as well as the caller’s demographic profile (gender, age,
ethnic heritage, level of education) are recorded. Unfortunately, it has been difficult for us to
obtain data related to the DOE programs.
e. Follow-up
In 2001, Self Reliance started to move in the direction of a broader outreach that would
involve a greater mix of components. The philosophy is the following: the radio program can get
someone interested in the topic, but the goal is also to help people follow-up on their interests.
One of the most recent projects that SRF have come up with is “celebre la ciencia” which is
funded by the National Science Foundation. For that project, SRF tries to combine media and
high profile events, like community festivals. Information on why science is important and how
families can get involved is presented in the media, with examples of science museums and zoos
where families can get involved in science (a radio project for the “pigeon project” at Cornell is
currently in preparation). Recently, SRF had 6 science-related organizations represented at the
Mount Pleasant festival in Mount Pleasant (MD), as well as a hands-on area. Notices were
posted on the radio and a couple of local TV news programs announced the event.
36
f. Case Study in Relationship With the Theoretical Models
The project clearly fits into the Contextual Model of public communication about
science, since it was specifically geared toward the Hispanic population and tailored to their
needs and attitudes. Since Hispanics make 11 to 15 percent of the US population, and data has
shown that a significant fraction of this minority feel discriminated against by the US health care
system, the project intended specifically to reach and inform that audience. Radio seemed like a
good medium since it appears that most of the Latino population have a good access to that
medium -- a greater access than the lower-income African-American families.
The project also had a public engagement component. The toll-free number was to
promote a self-informational process for the audience of the radio shows. The SRF clearly
intends to go beyond informational engagement, as the follow-up projects demonstrated, by
promoting active participation of Hispanic families in science activities, such as the ones
displayed in science museums, and therefore increase general interest for scientific issues.
C. Test of Theoretical Models: Conclusions
In the absence of methodologically sound summative evaluation data (comparing project

objectives to its outcomes), it was nearly impossible to assess the actual impact of some of the
funded educational projects. Our assessment of projects’ outcomes is based on our analysis of
the available data and on interviews, and not on data specifically gathered for evaluation
purposes. In other words, our comments shouldn’t be taken as critique of the projects, but rather
as a means to discuss the theoretical models.
Before discussing the models per say, it seems useful to present some concepts that are
used in some models, and more particularly the idea of “public engagement.” What is “public
engagement” in the context of science-related outreach, and what type of engagement can these
projects reasonably aim at increasing? Although educators would define “to engage with
science” as “to increase an individual’s interest and involvement with science,” policy-makers
would tend to give the term a “political” dimension. This might explain why “engagement” is
limited to “public participation in science policy” in the “public engagement” model for public
communication of science. However, as the case studies demonstrate, we could argue that
citizens can clearly be engaged in science (and ultimately in science policy) at different levels.
We propose the following levels of engagement with science:
1. Individuals can engage in a simple interaction with experts to discuss scientific issues
and their ethical implications (ex: Geneletter e-mails);
2. Individuals can be empowered through different public participation processes (ex: A
Question of Genes project; the minority conferences );
3. Citizens can be given authority as far as decision-making over science policy is
concerned. In this case, scientific experts are to some extent disempowered. This
form of engagement is the one traditionally put forward through the Public
Engagement in science model. However, although it is encountered in some public
communication of science instances (ex: consensus conferences) we did not identify
it within the DOE-ELSI educational portfolio.
37
This categorization could be used as a basis to define the goals of the educational projects, if
indeed engagement is one of their objectives. In the following discussion, we will use a broad
conceptualization of “engagement” that includes all the dimensions presented above.
What is the connection between the theoretical approach to public understanding of

science that we have discussed in Chapter II, and the reality of outreach? Different conclusions
can be reached from our analysis of the case studies. As we have seen, the projects that were
analyzed in this report have objectives and outcomes that clearly seem to fit into one of the
theoretical models for public communication of science. However, a more detailed analysis
shows that they might also fit into one, or more, of the other models.
All case studies share the goal of communicating accurate scientific information to an
audience, whether this audience is the general public or a specific group. In other words, the
Deficit Model of public communication of science seems to be, whatever the context, an
overarching framework for outreach. A problem seems however to arise: the level of knowledge
that needs to be fostered is not clear (as shown by Geneletter e-mails content or “Your Genes
Your Choices” change over time as far as the book content and detail level). This is not
surprising since there is a lack of consensus regarding the basic question of what constitutes an
adequate knowledge of genetics, a point that has been brought up in 2000 by the EREPG. The
EREPG report noted that “a major gap in DOE-ELSI education and resources portfolio is the
absence of studies that examine basic issues such as what each audience (students, teachers,
nurses, judges, lay public) actually needs to know about genetics and ELSI.” In other words,
basic research regarding what constitutes genetic literacy is needed for the Deficit Model to
successfully be used as framework for outreach.
Projects that seem to fall in the “deficit” model had also some “engagement” component.
We discussed how the YGYC book was widely used as basis of discussion in settings such as
religious congregations or college classrooms. The book was therefore actively promoting public
engagement with science, and a critical approach to ELSI related to genomics. In other words, in
the context of YGYC, the “deficit” approach showed some overlap with the “engagement”
model, if engagement is conceptualized as “empowerment” of the readers.
Projects that followed the Contextual Model of public communication of science were
also emphasizing public engagement, one of the goals being to promote public involvement in
science. Here again, an overlap between models traditionally presented as incommensurable in
theoretical discussions is apparent. As we said before, a “contextual” model pays attention to
specific audience needs in specific situations. We found that that this type of project, although
attempting to provide information and promoting understanding of a scientific issue, aimed more
particularly at shifting attitudes toward using scientific knowledge, rather than at specifically
increasing knowledge. In sum, such projects’ underlying goal was to change the relationship
between a specific community and scientific knowledge. It might be useful to include in the
summative evaluation of such projects measures of attitude change.
Finally, the project that fitted the “lay knowledge” approach did display characteristics
compatible with the “public engagement” model, by actively encouraging participants to seek
38
more information about genetic counseling, and by making the film available to a wide variety of
audiences, for particularly in educational settings.
In sum, the analysis of outreach projects clearly demonstrates that theoretical approaches
to public communication of science do not capture the complexity of the reality of informal
science education projects. The theoretical models discussed in the scholarly literature seem to
be far too static and tend to be presented as incommensurable, when in reality they should be
taken into account simultaneously. Individual models should also be refined by integrating
insights provided by the case studies analysis:
- Outreach projects have all a “Deficit Model” approach as a backbone, even if they
seem to follow other theoretical approaches.
- “Contextual Model” projects aim not only at increasing knowledge, but also at
changing the audience’s attitude toward science and scientists.
- “Public Engagement” can take place at three different levels:
. through a simple interaction between citizens and scientific experts,
. by empowering citizens,
. by providing real public authority over policy.
Figure 6 (next page) proposes a revised version of the theoretical models of public
communication of science that takes into account the conclusions reached through the case
studies analysis:
39
Deficit Model
Linear transmission of
information from experts to the
public
Contextual Model
Lay Knowledge Model
Tied to particular audience(s)
Acknowledges limitation of scientific information
Pays attention to needs and situations that may
be time, location, disease, language,… Acknowledges potential knowledge of particular
audiences
Highlights ability of audiences to quickly
become knowledgeable about relevant topics Highlight interactive nature of scientific process
Aims at changing attitudes as well as at Accepts expertise away from scientific
increasing knowledge Public Engagement community
Model
Tied to democratic ideal of wide public participation in
policy process
Builds mechanisms for engaging citizens

with science
Simple interaction between
3 potential citizens and scientific experts
levels
Citizens’ Empowerment
Real public authority over policy
Belief that good transmission of information

leads to reduced “deficit” in knowledge
Belief that reduced deficit leads to better

decisions about science
Belief that reduced

deficit leads to better support
for science
Figure 6: Revised Conceptual Models of Public Communication of Science
40
V Lessons to Be Retained
A number of conclusions discussed through this report can have operational usefulness
for the DOE-ELSI funding program.
As a general underlying framework, projects that are funded through the DOE-ELSI
projects should be conscious of which of the revised theoretical models presented on page 40
they plan to fit in. This, then, could translate into formalized program evaluation plans that
should be included in the DOE funding (a number of project managers pointed out that they
wished to perform such evaluations, but that often the lack of resources (funding) had prevented
them to do so in a methodologically sound manner). Setting project goals (as far as intended
audiences and outcomes) and comparing them to the project actual outcome through a
summative evaluation would clearly be facilitated if a framework such as the one proposed on
page 40 was used as a backbone.
Projects fitting into the Contextual-Engagement model, such as the “Human Genome
Project Information Conferences” did illustrate how important it was to build connections within
minority communities, and more importantly, to get the opinion leaders of such communities
involved in the project. However, promoting such an involvement requires strong interpersonal
communication skills, and a time commitment that often DOE-funded project leaders cannot
spare. Building on these comments, it could be suggested for DOE to devote funding to a Public
Relations type of program that would use the existing materials developed through other projects
to promote discussion through a network of connections among carefully and strategically
chosen communities. In other words, as our project has demonstrated, quality materials have
been developed in a number of settings. The goal would be to continue their distribution instead
of continuously remodeling the materials. In sum, DOE-ELSI might consider funding a project
whose purpose is networking-building instead of new material development. Rather, this project
would use existing material as the core of outreach. The networking could start by building
collaborations with organizations such as the Kiwanis Club, the Boy Scouts, or the Speakers
Bureau
Projects using the Deficit-Engagement Model could benefit for the following
observations: the projects analyzed seem to demonstrate that although they reached, to some
extent, the audience that were intended to reach, this might not have been as successful as
possible. Traditional media are the main source of science-related information for the majority of
the American population. If indeed the goal is to reach large numbers of individuals, traditional
media are the way to go, and the SRF project is a good example of this. In other words, DOE-
ELSI might consider a call for proposals for projects aiming at using traditional (as opposed to
science) media. This could include, of course, regular network radios, but also other informal
education media, such as mall displays. At a second level, as recently developed by the SRF,
DOE-ELSI could implement projects within community venues themselves, by taking advantage
of existing events such as fairs.
Media seminars could also be organized to inform and educate journalists about HGP
related outreach information, specifically for minorities. Programs with Associations such as the
41
Asian Journalists Associations, of the Black Journalists Association could, for example, be
developed.
Projects using the lay knowledge-engagement model are certainly, as the “Question of
Genes” project demonstrated, an interesting way to communicate and promote discussion around
controversial scientific topics, and have been under-used. However, such approaches would
benefit from more theoretical-grounded research. More specifically, funding for anthropological
research that would explore where genomics come as relevant in individuals’ lives would be an
important step toward using this model adequately. In other words, this research would explore
questions such as: what connection do people see with genomics? And what type of connection
do they feel they need to have? Only with clear answers to those questions can a lay knowledge
approach be used with its full potential (we refer the readers to the growing scholarly literature
on the public and genetics currently being published in journals such as Public Understanding of
Science).
In sum, our project has shown the potential of the outreach funded by DOE-ELSI, while
also showing that current theoretical models do not fully capture the real world of outreach.
42
References
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45
Appendix: Interviews/Contacts Performed
1) Zeta Phi Beta Sorority Project: Information Conferences on the Human Genome Project
- Paula Doyle, participant to the Workshop, as a representative of a local
community organization– Junior American Medical Association (JAMA)
- Dr. Jenkins, Board Member Emerita, Zeta Phi Beta National Education
Foundation
- David Leui, participant to the Workshop, as a representative of a local community
organization, State of the Art Inc.
- Kathryn Malvern– Chairman and Conference Project Director, National
Educational Foundation, Zeta Phi Beta Sorority, Inc
- Sheryl Martin, DOE-HGMIS, for information on web use
2) Book: “Your Genes, Your Choices”

- Maria Sosa - Science Literacy Trainer and Editor-in-Chief of Science Books &
Films, Directorate for Education and Human Resources Programs, American
Association for the Advancement of Science.
- Shirley Malcom - Head, Directorate for Education and Human Resources
Programs, American Association for the Advancement of Science
- Catherine Baker – Plain Language Writer
- Jim Miller - Senior Program Associate, Program of Dialogue on Science, Ethics,
and Religion, American Association for the Advancement of Science
- Sheryl Martin, DOE-HGMIS, for information on web use
3) EINSHAC “Genetics in the Courtroom Conferences”

- Judge Michael Getty, Chairman of Chicago Conference
- Judge Jose Lopez, Originator of Science Academy Division
- Judge Pauline Newman, Chair of Advisory Committee
- Franklin Zweig, Coordinator for EINSHAC
- Judge Joan Zeldon, Co-Chair, Australia Working Conversation
4) The Geneletter
- Paul Billings, Vice President for Life Sciences and Clinical Affairs
Wipro HealthSciences (and former Editor of the Geneletter)
- Dorothy Weiss, CERC-UAP, Shriver Center, UMass (co-PI of the project)
5) Hispanic Radio Episodes

- Robert Purcell, Self Reliance Foundation
- Antonio Vasquez, Director of the Hispanic Radio Network
6) A Question of Genes
- Noel Schwerin, Director, Backbone Media
46

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Assessing Models of Public Understanding

In ELSI Outreach Materials

U.S. Department of Energy Grant DE-FG02-01ER63173

Bruce V. Lewenstein, Ph.D. (Principal Investigator)

II THEORETICAL BACKGROUND .......................................................................................................................5

APPENDIX: INTERVIEWS/CONTACTS PERFORMED...................................................................................46

As part of the educational component, a significant portion of DOE-ELSI funds have

“Public understanding of science,” or PUOS, is a relatively new field of scholarly inquiry

1. The Deficit Model

2. The Contextual Model

3. The Lay Expertise Model

4. The Public Engagement Model

Finally, a "public engagement" model has emerged, focusing on a series of activities

Contextual Model Lay Knowledge Model

Tied to particular audience(s) Acknowledges limitation of scientific information

Highlights ability of audiences to quickly Highlight interactive nature of scientific process

Deficit Model Public Engagement Model

Figure 1: Conceptual Models of Public Communication of Science and Technology

As a preliminary step, we will provide an overview, a “map” of DOE-funded of outreach

1. Mapping DOE-ELSI Projects

We performed a content analysis of 1994-2000 projects’ abstracts. The 94 abstracts,

Finally, the “communication medium” variable included workshops, curriculum materials

2. Case Study Analysis

2.1. Selection of the Case Studies

2.2. Documenting the Case Studies

1. In-Depth Qualitative Interviews With Project Leaders4

We used a semi-structured interview format, in which the interviewer has a series of

2. Historical Review of Documents

When applicable, we tracked public use of web-documents related to the project.

4. Content Analysis of Documents

A. Mapping DOE-ELSI Projects

In terms of type of projects, 77% of the 1994-2000 DOE-ELSI projects had an

Figure 2: DOE-ELSI funded projects program areas (1994-2000)

Figure 3: Audiences of DOE-ELSI Funded Projects (1994-2000)

lay knowledge model

Figure 4: Public Communication of Science Models and DOE-ELSI Educational Projects

Figure 5: Main Communication Medium Used by the DOE-ELSI Educational Projects

Table 1: Case Studies Selected

Case Study The Challenges of Your Genes The Hispanic A Question of

2. Case Studies Analysis

1. A “Web-based” approach: The Geneletter

a. Presentation of the project: objectives and intended outcomes

Geneletter published 10 issues on its site at www.geneletter.org, from July 1996 to

Genetic testing, genetic counseling: present in 24% of the articles (*)

(*) DOE-ELSI research categories, as reported on the DOE-ELSI webpage.

Geneletter users were divided among company-bases users(.com-38%), network users

d. Users’ Feedback/Evaluation data

Genetic testing 16.4%

e. Follow-up (changes after initial project ends)

f. Outcomes of the Project

g. Case Study in Relationship With the Theoretical Models

Although Geneletter fits in the Deficit Model of public communication of science, it

2. A “Workshop Based Approach:” the Human Genome Project Information Conference,

a. Presentation of the Project: Objectives and Intended Outcomes

- Genetic screening, testing and counseling: Issues of importance to the minority

As we mentioned earlier, the conference organizers made a point of encouraging

- 55 attendees requested to serve as future Community Liaison Coordinators, and

f. Outcomes of the Project

The project broadly followed the “contextual model” of public communication of

a. Presentation of the Project: Objectives and Intended Outcomes