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Volume
2:
No. 2, April 2005
ORIGINAL RESEARCH
Review of State
Comprehensive Cancer Control Plans for Genomics Content
Debra E. Irwin, PhD, MSPH, Erin Shaughnessy Zuiker, MPH, Tejinder Rakhra-Burris,
MA, Robert C. Millikan, DVM, PhD
Suggested citation for this article: Irwin DE, Zuiker ES, Rakhra-Burris T, Millikan RC. Review of state Comprehensive Cancer Control plans for genomics content. Prev Chronic Dis [serial online] 2005 Apr [date cited]. Available from: URL:
http://www.cdc.gov/pcd/issues/2005/
apr/04_0128.htm.
PEER REVIEWED
Abstract
Introduction
The goals of this study were to determine U.S. states with Comprehensive Cancer Control plans
that include genomics in some capacity and to review successes with and barriers to implementation of genomics-related cancer control initiatives.
Methods
This study was conducted in two phases. Phase one included a content analysis of written state Comprehensive Cancer Control plans (n = 30) for terms related to genomics, or “genomic components” (n = 18). The second phase involved telephone interviews with the Comprehensive Cancer Control plan coordinators in states with plans that contained genomic components (n = 16). The
interview was designed to gather more detailed information about the genomics-related initiatives within the state’s Comprehensive Cancer Control
plan and the successes with and barriers to plan implementation, as defined by each state.
Results
Eighteen of the 30 Comprehensive Cancer Control plans analyzed contained genomics components. We noted a large variability among these 18 plans in the types of genomics components included. Nine (56%) of the 16 states interviewed had begun
to implement the genomics components in their plan. Most states emphasized educating health care providers and the public about the role of genomics in
cancer control. Many states consider awareness of family history to be an important aspect of their Comprehensive Cancer Control plan. Approximately 67% of
states with family history components in their plans had begun to implement these goals. Virtually all states reported they would benefit from additional training in cancer genetics and general public health genomics.
Conclusion
The number of states incorporating genomics into their Comprehensive Cancer
Control plans is increasing. Family history is a public health application
of genomics that could be implemented more fully into Comprehensive Cancer
Control plans.
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Introduction
Comprehensive Cancer Control (CCC) is an emerging public health model that seeks to bring together public and private stakeholders to efficiently use limited resources to reduce the burden of cancer. The CCC program allows states and territories to facilitate their own partnerships to address their unique cancer burdens. CCC results in many benefits, including increased efficiency for
delivering public health messages and services to the public. The Centers for Disease Control and Prevention’s (CDC’s) National CCC Program (NCCCP) is a resource for supporting CCC
efforts. Since 1998, the number of programs participating in NCCCP has grown from six to 61 (1). With this support, state, tribal, and territorial health agencies continue to establish
broad-based CCC coalitions, to assess the burden of cancer, to determine priorities for cancer prevention and control, and
to develop and implement CCC plans. State planners play a large and important role in CCC programs as the cancer burden increases for the population and advances in cancer genomics continue to challenge public health specialists.
For public health purposes, genetics may be defined as the “study of single gene hereditability,” whereas genomics is the study of functions and interactions of all the genes in the genome, including their interactions with environmental factors (2). It is estimated that 5% to 10% of cancer is caused by autosomal dominant inherited genetic changes, such as
BRCA1 and BRCA2 mutations in breast and ovarian cancer (3). Family
history of cancer in a first-degree relative has been shown to confer an
increased cancer risk (e.g., the relative risk of breast cancer conferred by a
first-degree relative with breast cancer is 2.1) (4). Individuals who may have a genetic susceptibility
because of cancer in their family can be distinguished from
individuals in the general population by the relatively straightforward process of taking a family history. The American Society of Clinical Oncology supports integrating cancer risk assessment and management, including genetic testing for cancer predisposition genes, into the practice of oncology and preventive medicine (5).
The states are committed to reducing the burden of cancer among their populations, and the emerging contribution of genetics and genomics to the field of cancer control cannot be ignored. The goals of this study were to determine
U.S. states that include genomics in some capacity in their CCC plans and to review the successes with and barriers to implementation of these genomics-related
state cancer control initiatives.
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Methods
This study was conducted in two phases. The first phase was a content review of written state cancer control plans. In collaboration with the CDC, the North Carolina Center for Genomics and Public Health (NCCGPH) identified state CCC plans funded by the CDC from 1997 to 2004. Each plan was searched for the words “genetics,” “genomics,”
“genes,” “family history,” “DNA,” “first-degree relative,” and “heritability.” The search terms were identical to those chosen by the CDC for an earlier content analysis. These search terms were used to create a comprehensive list of potential genomics-related topics found within the state plans. Throughout this document, these terms
will be referred to as “genomic components.”
Several themes from among the genomic components were detected across plans, and these were tabulated. A report was written summarizing overall themes, supplying standardized definitions of genomic components, and detailing genomic components found in each state’s CCC plan.
Once the written CCC plans were reviewed, five topic areas were identified as areas needing more information to provide a more complete picture of the genomic components within the plans.
The five topic areas were 1) the CCC plan writing process; 2) successes with and barriers to implementation; 3) general public and health care provider
education programs that may have been implemented; 4) priority of genomics in the state health department; and 5) additional partnerships, training, and technical assistance that would be useful for CCC
coordinators, coalitions, and state cancer control planners. NCCGPH staff, in consultation with the CDC, developed a telephone interview to gather additional information
on these topics. The Institutional Review Board of the University of North Carolina approved the interview
component of the study.
The second phase of the study involved telephone interviews with the CCC plan coordinators in states with genomic components in their cancer control plans. Sixteen of the 18 states agreed to be interviewed. The summary report from the content review of the written CCC plans (Phase 1) was sent to all 16 of the state CCC coordinators for their review prior to their scheduled interview. At the
beginning of the interview, the CCC coordinators were asked to verify that the summary of genomic components for their state was accurate and complete. No changes or additions were made by any of the states interviewed. All interviews were audiotaped and transcribed, and copies of the transcriptions were sent back to each state for quality control purposes and their final approval.
The interview used a semistructured questionnaire (Appendix) and gathered information about only the genomic components within the CCC plan. (The other elements of the CCC plans were not discussed in the interview.) The questions
addressed the five topics listed above. Each state was allowed to determine if implementation of the “genomic components” had begun based on the context of their state plan. In addition, standardized definitions of “success and barriers” were not imposed; each state was allowed to determine success based on its plan and goals.
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Results
Summary of written Comprehensive Cancer Control plans
Of the 30 CCC plans analyzed, 18 contained genomic components. Among these 18 plans, we found large variability in the types of genomic components included.
Table 1 summarizes the frequency of the main themes among the CCC plans. Most states used the terms “genetics” or “family history,” while only one state referred to “genomics” in the written CCC plan.
Half of the states intended to monitor advances in the cancer genomics field by publishing new information through their in-house newsletters, convening advisory panels, working with statewide experts in the field, and providing professional educational programs. Slightly more than one quarter of the states discussed gene–environment interactions in any context. Gene–environment interactions were
discussed under a variety of topics; for example, variations seen in incidence rates among racial and ethnic groups for certain cancers, genetic research studies
on various nutrients, and the relationship between inherited susceptibility and environmental factors for some cancers.
One theme, education, consistently presented itself in two forms: 1) increasing awareness about genomics among health care providers, and 2) providing education about genomics and its role in cancer control to patients and the general public. Approximately 44% of the CCC plans targeted education of health care providers and the public to promote early screening for those
individuals identified at higher risk of cancer based on family history (data not shown). Also, one third of plans (33%) mentioned training health care professionals in the use of cancer risk assessment, including the use of family history tools.
Summary of interviews
Nine out of the 16 states interviewed had begun implementation of the
genomic components of their plan at the time of our interview
(Table 2). All of these states were funded through implementation-type grants.
States that reported initiation of implementation projects did so largely through educational forums or seminars, presentations at professional meetings,
publication and distribution of fact sheets on specific cancers, and public service announcements (PSAs) that included issues of family history. Only two states reported that genomics was somewhat not a priority within their state health department (Table 2). Many states (43.7%) reported implementing education efforts aimed at health care providers, and 25% of the states reported providing some
form of public education about genomics. Educational efforts have been accomplished mainly through holding open meetings and seminars, attending public health fairs, publishing fact sheets, issuing PSAs, and developing Web sites (Table 2).
Six states (data not shown) discussed implementation of their objectives to educate the public about family history. Initiatives included developing fact sheets, brochures, and Web sites discussing individual cancers and the role that family history plays as an important risk factor to consider when assessing cancer risk and the need for early screening. Some of these states held forums for
health care professionals to discuss the importance of family history as a tool in assessing cancer risk. One state has convened a panel and developed a pilot to use the state cancer registry to help identify families at high risk for cancer development.
The primary reasons cited for successful implementation of genomic components within the state CCC plans were
the following: 1) establishing strong partnerships within the state; 2) obtaining additional funding for implementation; and 3) making genomics a high priority within the state health department
(Table 3). The types of partnerships varied and included private industry, major medical centers within
the state, public research institutions, and universities. Many of the advisory committees had members who convened an array of partners within the state. Funding was obtained from national and local organizations, private industry, academic institutions, and other public resources. As expected, lack of additional funding and competing priorities were the major reasons
cited as barriers to
successful implementation (Table 3).
Virtually all of the states interviewed indicated that they would welcome additional training (n = 14) and/or technical assistance (n = 6) in genomics. States requesting additional training preferred some level of interpersonal interaction (100%), with the essential component being a live person to field questions, whether that be via phone, video,
the Internet, or a face-to-face training
session.
A basic public health genomics course was requested by 12 states, with topics including
1) the definition of genetics vs genomics; 2) risk assessment and family history issues;
3) proteomics; and 4) gene–environment interaction
(Table 4). Three states requested training in the ethical, legal, and social issues (ELSI) of cancer genomics (Table 4). And
six states
requested a template or “how to” guide for implementing genomics issues into cancer control (Table 4). In addition to training requests,
six states requested technical assistance; five of these six states requested program planning, implementation, and evaluation services (Table 4).
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Discussion
As expected, we noted a great deal of inconsistency in both the overall content and the level of detail within specific action plans. It is important to note that the dates and coverage of the plans range from 1997 to 2008. The more recently published plans have more extensive genomics content. For example, early plans (published in 1997 or 1998) do not include a section on breast
cancer and genetic testing for susceptibility. The primary genomic components within these earlier plans are related to family history as a cancer risk factor. Conversely, plans published after 2000 provide more information on genetic testing for inherited breast cancer susceptibility (BRCA1
and BRCA2 genes) as well as brief discussions of familial risk assessment.
Individuals involved in writing the plans and the process that each state underwent to write the plans may also have contributed to the variability in genomic components seen among the CCC plans. Some of the individuals interviewed for this review were not on staff at the time the plans were written and could only provide limited information regarding the process. However, all of the states
used a collaborative writing process, involving several individuals with varying expertise who came together to draft the plans. In addition, the individuals interviewed may not be aware of all the programs that are ongoing within their state,
so these results may reflect a subset of genomics-related activities within the state health department.
Nine of the 16 states we interviewed had begun to implement genomics-related projects within their CCC plan. Implementation was not strictly defined for the states, but instead states were allowed to determine whether or not implementation had begun based on the context of their state plan. The states were given the opportunity to define “successful” for the
context of their program. Similarly, a standardized definition of “success and barriers” was not imposed. Hence, there is most likely variability in the interpretation of these terms.
Some of the state implementation projects were specifically designed to address genomics-related goals and objectives within the CCC plan, while other states have chosen to implement broader programs to address genomics-related CCC components as well as other CCC plan goals. These implementation projects varied greatly among the states and included such activities as creating Web sites and
fact sheets and developing innovative public and health care provider educational programs. For example, one state trained local barbers in an ethnic community as “lay educators” to promote prostate cancer awareness, including risk from family history. Using the barbershop as a gathering place, the lay educators provided literature and information to clientele about the importance of
early screening and family history risk. A video was also created to play in the barbershop to provide more information about prostate cancer.
It is interesting to note that only one of the plans reviewed actually used the term “genomics”; the others used the term “genetics.” The one plan that used the term “genomics” was recently updated, reflecting the fact that genomics is a relatively new concept. The understanding of and use of this term may not yet be fully incorporated into public health
practice. In addition, because “genomics” is new terminology, some states may have chosen not to use the term in order to make their plans more reader friendly.
Education is a theme that consistently presented itself in two forms: 1) increasing awareness about genomics among legislators and health care providers, and 2) providing education about genomics and its role in cancer control to patients, providers, and the general public. All
of the plans discuss educating the public about early screening and prevention, specifically
for breast,
ovarian, colon, and prostate cancers. Most plans discuss the emerging field of cancer genetics, and all of the plans mention the need to monitor ongoing research and advances within the field. Educational programs were implemented as part of ongoing seminars or as stand-alone events, including fairs, athletic events, and social hours. Their success was reported as being largely dependent on
aspects of their presentation (appropriate topics, dynamic speakers), timing (appropriate length for the event) and successful advertising.
The emphasis placed on raising awareness and educating health care providers and the public may reflect the time at which the plans were written, which was still early in the process of integrating genetics into public health cancer control efforts. This result seems appropriate given the early stages of the field of cancer genomics and available public health applications at the time of
publication. Also, there were few commercially available tests for cancer genes that showed a significant public health benefit at the time these state plans were developed.
Using family history as a risk assessment tool is an important component within cancer genetics and one of the most amenable public health applications of genomics at this time (5-8). Genetic testing should be offered when an individual has a family history suggesting a genetic cancer susceptibility condition (5). Several states simply mention that family history is a risk factor for
specific cancers, such as breast, colon, and prostate cancer. Other states dedicate entire sections to family history and call for educating providers about its use in cancer risk assessment and training them to detect patterns of inheritance and differentiating hereditary syndromes. Family history is a public health application of genomics that could be implemented more fully into CCC plans
through awareness and education efforts.
In its 2003 annual report, the CDC identified the premature commercialization of genetic tests — before safety, efficacy, and cost-effectiveness had been established — as one of the key issues in genetic testing (9). The year 2003 brought the first direct-to-consumer advertising for an inherited breast and ovarian cancer susceptibility genetic test (BRCA1 and
BRCA2). Given this
recent development, it is not surprising that none of the reviewed plans discussed the impact of commercialization of genetic testing and direct-to-consumer marketing for genetic susceptibility tests. As technology advances and more tests are available to the public, there will likely be an increase in this type of marketing activity by commercial entities. This development
highlights the increasing importance of providing education about informed uses of genetic testing as it relates to cancer.
Some states (approximately one third) identified reasons for success in implementation of the genomic components of their state plans. Predominantly, these included securing adequate funding, developing excellent partnerships, and having genetics deemed a high priority within the state health department.
Two states noted that the resources within the states, such as having staff
dedicated to public health genomics, increased the likelihood of successful implementation. As expected, the primary barriers to successful implementation of the genomic components were lack of funding and competing priorities. Almost 90% of states
(14/16) interviewed were interested in obtaining additional genomics-related training and/or technical assistance.
In summary, the number of states incorporating genomic components into their CCC
plans is increasing. These states are beginning to implement these objectives.
Periodic reviews of the successes and barriers related to implementation of
genomic components should continue so as to document progress and share the
lessons learned from these experiences.
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Acknowledgments
We thank Melanie Myers, Phyllis Rochester, and Nikki Hayes for their valuable contributions to this work. The Center for Genomics and Public Health at the University of North Carolina was supported by a cooperative agreement from the CDC
through the Association of Schools of Public Health, Grant U36/CCU300430-22. The contents
of this document are solely the responsibility of the authors and do not necessarily represent the official views of the CDC or ASPH.
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Author Information
Corresponding Author: Debra E. Irwin, PhD, MSPH, Research Assistant Professor, North Carolina Center for Genomics and Public Health, Department of Epidemiology, School of Public Health, CB 7435, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599. Telephone: 919-218-3612. E-mail: dirwin@email.unc.edu.
Author Affiliations: Erin Shaughnessy Zuiker, MPH, Research Associate, Tejinder Rakhra-Burris,
MA, Project Director, North Carolina Center for Genomics and Public Health, School of Public Health, University of North Carolina at Chapel Hill,
Chapel Hill, NC; Robert C. Millikan, DVM, PhD,
Associate Professor, Department of Epidemiology, School of Public Health, University of North Carolina at Chapel Hill,
Chapel Hill, NC.
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