About Us

10 years of Public Health Genomics at CDC
1997-2007

2.0 Projects of the National Public Health Genomics

Public Health Genomics Capacity Building

State Health Departments

State and local health departments serve an essential and unique role in disease prevention and health promotion in the U.S. These crucial entities have a legal mandate for infectious disease control and prevention, and are responsible for core public health functions, such as surveillance, epidemiology, laboratory services, and environmental sciences. Their strong foundation in establishing public, private, and government partnerships and coordinating activities allows them to reach a broad range of audiences to directly address health problems. Given their scope and capacity-development orientation, health departments are well-suited to provide leadership and coordination for integrating genomics knowledge and tools into public health programs for disease prevention and health promotion.

In July 2003, cooperative agreements were established with state health departments, which included seven separate funding components (tobacco; nutrition, physical activity, and obesity; WISEWOMAN; oral disease; arthritis; BRFSS; and genomics). The cooperative agreements were implemented with a five-year funding period. Four awardees were selected: Michigan, Minnesota, Oregon, and Utah. A major focus of the cooperative agreements to date has been the integration of genetic risk factors and family history into core chronic disease prevention programs and state public health functions.

OPHG provides specific technical and administrative assistance to the four states in developing and expanding their public health genomics capacity. State activities focus on building infrastructure and partnerships, training the public health workforce, educating the general public, using surveillance surveys to assess genomics integration, and promoting genomics screening tools.

Genomics Programs

Michigan Department of Community Health

The Public Health Genomics Program of the Michigan Department of Community Health (MDCH) is located in the Division of Genomics, Perinatal Health, and Chronic Disease Epidemiology in the Bureau of Epidemiology, and is responsible for implementing Michigan’s State Genetics Plan, which was established in 2002. The goals of this plan are to 1) increase genetic literacy in the State of Michigan, 2) assess the public health impact of heritable conditions and the utilization of genetic services, 3) improve access to genetic information, prevention strategies and services, 4) promote early identification and treatment of individuals with birth defects, heritable disorders or genetic susceptibilities, throughout the life cycle, 5) identify best practices and promote a policy framework to assure high quality services, and 6) promote appropriate public health responses to advances in genomic medicine and technology. The objectives of the cooperative agreement fall under these goals.

The Michigan Genomics program is comprised of 19 staff from the newborn screening and public health genomics units. Four of these staff work full-time on the objectives of the cooperative agreement. Also included among the staff are a program manager, genomics epidemiologist, genomics educator, and gene-environmental specialist, who have diverse backgrounds in genetic counseling, epidemiology, public health, environmental sciences, and education.

In addition to the cooperative agreement, the Michigan Genomics program also receives funding from the Genetic Services Branch of the Health Resources and Services Administration (HRSA). Support is also provided by partners within the state health department and external organizations.

Partnerships

The Michigan Genomics program has close partnerships with the chronic disease prevention programs within the state health department, including arthritis, cancer, cardiovascular disease, dementia, diabetes, osteoporosis, and tobacco. The program also works collaboratively with the state laboratories, vital records, epidemiology, immunization, infectious disease, environmental health, and maternal and child health; Children’s Special Health Care Services (CSHCS); School Health; Office of the Surgeon General; Medicaid; and Women, Infants, and Children (WIC). Examples of genomics integration include:

• Cardiovascular disease: 1) Since 2004, the Michigan Genomics program has been developing a new project to address sudden cardiac death (SCD) of the young in Michigan. The goal of this project is to identify public health and medical system changes, and family-based interventions to increase awareness, screening, and treatment for relatives potentially at risk. 2) MDCH receives CDC funds to implement the WISEWOMAN program in Michigan, which focuses on reducing the burden of cardiovascular disease in women of low socioeconomic status and low health insurance coverage. The Michigan genomics program collaborates with the WISEWOMAN program by integrating family history into risk assessments and educational materials on cardiovascular disease.
  
• Diabetes: 1) The Michigan Genomics program has developed two educational design modules for diabetes and genetics and family history. The first module includes information on genetics and genomics, and the role of genomics and family history in diabetes. The second module includes the same information as the first module, and also resources on genomics and family history in relation to diabetes, and discusses the importance of well-controlled diabetes for women of reproductive age, and the use of informed consent and genetic technology for diabetes. 2) The program collaborates with three diabetes programs called Healthy Hair, Dodge the Punch, and Healthy Families Start with You, which were initiated by the National Kidney Foundation of Michigan. The goal of these programs is to prevent kidney disease among African Americans by raising awareness of diabetes and high blood pressure and risk factors, including genetics and family history, and encouraging individuals to take action.
  
• Newborn screening program: The Michigan Genomics program and the Newborn Screening Program are leading a new project to develop a repository of neonatal specimens collected from the general population in Michigan from 1978 to 1999 (21½ years). Main collaborators of this project are the University of Michigan and Michigan State University. Potential analyses of this repository include examining specimens for associations between chemical contaminants and health outcomes and linking data with public health registries in the state (e.g., birth defects, cancer, BRFSS).

The Michigan Genomics program also partners with a broad range of organizations throughout the state, including hospitals, health plans, local public health departments, faith-based groups, health care providers, K-12 schools and universities, research groups, mental health groups, policy makers, media, private sector, and support and advocacy groups. The Michigan Genomics program has ongoing activities with the following partners: Michigan Cancer Consortium, University of Michigan Center for Public Health and Community Genomics, Michigan Cancer Genetics Alliance, Oakwood Health Systems, and Michigan State University. Some of these activities include improving health care provider tools for collecting family history information, integrating family history risk assessments into disease detection programs, developing a model for implementing genomics programs in other state health departments, developing educational materials on chronic diseases and genetics and family history, conducting community outreach, and planning and implementing scientific conferences.

Surveillance and Other Data Collection Activities

Since 2004, the Michigan Behavioral Risk Factor Surveillance System (BRFSS) has included genomics questions. These include: four questions on family history in 2004, seven questions on family history (general health, and specific to colon and rectal cancer) in 2005, questions on direct-to-consumer marketing (DTC) in 2006; and two questions on sudden cardiac death of the young in 2007. The Michigan Genomics program plans to submit a manuscript on the results of colorectal cancer and family history to MMWR this summer.

In 2005, the Michigan Genomics program collaborated with the Michigan Cancer Registry to conduct medical chart reviews in 23 clinics randomly selected throughout the state. In all, 853 charts from December 2003 to October 2004 were systematically reviewed for the presence or absence of documented information on family history of cancer. Based on the findings, the Michigan Genomics program is working with the Michigan Cancer Registry to improve the documentation and use of family history information by physicians, and to increase awareness among patients. Key activities are: inclusion of a mandatory family health history question in the Michigan Cancer Registry in 2007, educating physicians on recommended practices, and encouraging patients to collect and record their family history information routinely and to share this information with their physicians.

The Michigan Genomics program, in collaboration with an insurance provider, conducted another medical chart review project in 2005, which included 250 medical charts from 50 physicians. These charts showed similar findings on the presence or absence of family history information. Another chart review was conducted in 2006, using a revised data collection tool which had been expanded to include questions about physician referrals for genetic services, use of folic acid, and birth defects.

 

Minnesota Department of Health

The Chronic Disease Genomics Project of the Minnesota Department of Health (MDH) is located within the Division of Health Promotion and Chronic Disease. One full-time person, with experience and educational background in genetic counseling and public health, works exclusively on activities of the genomics project. Part-time student interns from the University of Minnesota and health educators and web designers in the state health department also provide support.

The primary source of funding for the Minnesota Genomics program is through the cooperative agreement. Support is also provided by partners within the state health department and external organizations. To strengthen the efforts of the genomics program, contracts have been established, using cooperative agreement funds, with the Center for Public Health Education and Outreach at the University of Minnesota (UMN) to develop educational materials and Web sites and organize workshops and meetings.

Partnerships

The Minnesota Genomics program partners with various chronic disease prevention programs within the state health department, including arthritis, asthma, cancer, cardiovascular disease, and diabetes. Some examples of collaborative activities include:

• Cardiovascular disease: The Minnesota Genomics program collaborates with the WISEWOMAN program by integrating family history into risk assessments and educational materials on cardiovascular disease. It also provides a “hotline” for women who have questions about family history and genetics.
  
• Cancer: The Sage Screening Program is a statewide, comprehensive prevention program for breast and cervical cancer among women who are 40 years old or older and have low socioeconomic status and limited or no health insurance coverage. The Minnesota Genomics program collaborates with SAGE by integrating family history into its educational activities, and publishes articles on cancer and family history in the newsletter SAGE Advice, which is written for clinicians.

  The Minnesota Genomics program successfully facilitated the integration of genomics into the comprehensive state cancer control plan, which provides recommendations to policy makers, planners, providers, and advocates.

A key external partnership of the Minnesota Genomics program is the Center for Public Health Education and Outreach at the University of Minnesota (UMN). In 2006 and 2007, Minnesota Genomics staff collaborated with UMN on the planning and implementation of the annual Summer Public Health Institute, which included courses on public health genomics. The 2007 Institute also included a roundtable discussion featuring keynote speaker Muin Khoury, MD, PhD, director of OPHG, and other experts in public health genomics. More than 300 participants from 28 states and four countries enrolled in over 50 courses offered by the Institute.

Data Collection Activities

In 2006, the Minnesota Genomics program collaborated with a local health plan to conduct a review of 12,263 electronic medical charts to evaluate the quality of family history data concerning four types of cancer (breast, colon, prostate, and ovarian) captured from January 2004 to October 2005. More than 40% of the charts documented family history. Of charts with family history, 39% included documentation for cancer. For the four cancers, less than 4% included any information on age of onset and death.

In 2006, the Minnesota Genomics program led a project to systematically review established guidelines (e.g., by the U.S. Preventive Services Taskforce, the American Cancer Society, and other organizations) and to analyze research studies that summarized epidemiological data on the relationship between modifiable and non-modifiable risk factors (e.g., family history) and chronic diseases (e.g., asthma, cardiovascular disease, cancer, diabetes). This information was used to develop fact sheets on chronic diseases and family history for the public, which were disseminated widely and adopted by the chronic disease program in MDH and in other state genomics programs. The Minnesota Genomics program plans to submit the findings of this review for publication in peer-reviewed journals.

 

Oregon Department of Human Services

The Genomics Program of the Oregon Department of Human Services (ODHS) is located in the Office of Family Health in the Public Health Division. The goal of the program is to implement the goals of the Oregon strategic plan for genetics and public health, which include reducing morbidity and mortality from inherited conditions and birth defects, improving quality of life for individuals and families impacted by inherited conditions and birth defects, and empowering people to make informed decisions about genetics and health.

The Oregon Genomics program is comprised of five part-time staff, with experience and education in genetic counseling, public health, epidemiology, policy, and graphic and information design. The program also receives support from the Oregon Health and Science University and other institutions. The primary source of funding for the Oregon Genomics program is from the cooperative agreement with OPHG. Support is also provided by partners within the Oregon state health department and external organizations.

Partnerships

The Oregon Genomics program is engaged in activities with various chronic disease prevention programs within the state health department, including asthma, cancer, and diabetes. Some examples of collaborative activities include:

• Diabetes: Over the past year, the Oregon Genomics program has actively worked with the state chronic disease prevention programs to incorporate genomics into existing public health surveillance surveys. For example, family history questions for diabetes were included in BRFSS, and family history questions for asthma were included in PRAMS II. The Oregon Genomics program and the state chronic disease prevention programs have published articles in peer-reviewed journals and other publications, and presented posters on the results of these surveys.
  
• Cancer: The Oregon Genomics program facilitated the inclusion of genomics into Oregon’s Comprehensive Cancer Control Plan. The plan includes genomics goals for the state, and the priorities of the Oregon genomics program to achieve these goals. Specific objectives fall under prevention, such as “Increase the proportion of Oregonians who are aware of genetic factors that increase individual cancer risk.” Indicators for this objective are: 1) number of health care provider training sessions, and 2) type and number of participants. Information collected from the family history project, conducted in collaboration with the Kaiser Permanente Northwest and with primary-care providers, will be used to achieve the genomics objective for the Comprehensive Cancer Control Plan.

The Oregon Genomics program also collaborates with external partners, such as the Oregon Partnership for Cancer Control, Cystic Fibrosis Newborn Screening, and clinical genetic providers.

Surveillance and Other Data Collection Activities

Since 2005, the Oregon Genomics program has routinely included genomics questions in BRFSS. The 2005 survey questions inquired about health care provider practices and family history and perceived risk. In 2006, questions on diabetes screening among non-diabetics, genetics knowledge, and direct-to-consumer marketing were included. In 2007, questions will focus on family history of cardiovascular disease versus diabetes, and direct-to-consumer marketing. The genomics program also included questions in the PRAMS II survey inquiring about health care provider practices and family history, diabetes, and asthma.

In 2005, the Oregon Genomics program conducted the “Provider Family History Project” with Kaiser Permanente Northwest (KPNW) to learn about primary-care provider practices for collecting and using family history of patients, and to assess the use of CDC’s family history tool. The results of this project were presented to OPHG and other partners, and a manuscript is currently being developed for a peer-reviewed publication. The Oregon Genomics program intends to follow up with the primary-care providers involved in this project, and identify needs and areas for improving the collection and use of family history information.

 

Utah Department of Health

The Chronic Disease Genomics Program of the Utah Department of Health (UDOH) is located in the Division of Community and Family Health Services in the Bureau of Health Promotion. A part-time program manager, a full-time genomics educator, and a part-time epidemiologist work on program activities. An external advisory group provides direction for genomics strategies and activities in Utah.

In February 2006, the Utah Genomics program started the Family Health History Taskforce to position Utah as a leader in family history. This Taskforce is made up of 65 individuals with backgrounds in genealogy, genetic epidemiology, academics and research, and also community members, and other individuals interested in family history. Members participate in committees (e.g., public awareness, clinical applications, methodology and research, etc.). The Taskforce meets quarterly, and the committees meet monthly.

The primary source of funding for the Utah Genomics program is through the cooperative agreement with CDC. Other offices in the bureau share resources with the Utah genomics program on communications and contract management.

Partnerships

The Utah Genomics program is engaged in activities with various chronic disease prevention programs within the state health department, including asthma, cancer, and diabetes. Some examples of collaborative activities include:

• Asthma: In April 2006, the Utah Genomics program participated in a workshop with the asthma program to develop genomics priorities and activities for asthma, which included pharmacogenomics, family history, and ethical, legal, and social issues. Activities focused on: 1) identifying partners, 2) developing fact sheets on genetics, genomics, and pharmacogenomics, 3) offering genomics workshops, 4) developing public awareness campaigns, and 5) developing surveys. These priorities and activities were included in the new five-year Utah Asthma Plan to be released in 2007.
  
• Cancer: The Utah Genomics program successfully integrated genomics into the early detection and prevention component of the state Cancer Plan. The objective is to increase the number of families and providers who appropriately utilize family health histories. Strategies to achieve this objective are: 1) public education on family history, 2) provider education on family history, 3) address issues of discrimination and confidentiality, 4) identify moderate and high risk populations, and 5) increase moderate and high risk individuals who obtain appropriate screening and referral to genetic services. To support continued efforts at genomics integration, the program participates in routine cancer coordination meetings.

The Utah Genomics program also has key partnerships with external organizations, such as Intermountain Health Care and the Genetic Science Learning Center.

Surveillance and Other Data Collection Activities

Since 2005, genomics questions have been included in the BRFSS. In 2006, genomics questions focused on asthma, and in 2007, questions focused on diabetes and family history. In 2005, the Utah Genomics program included questions in the Youth Risk Behavior Surveillance System (YRBSS). This survey is conducted every other year, and it includes national, state, and local school-based surveys of representative samples of 9th through 12th grade students.

 

Centers for Genomics and Public Health

To address the need to build public health genomics capacity in chronic disease prevention and health promotion programs, OPHG collaborated with the Association of Schools of Public Health to establish the first Centers for Genomics and Public Health in 2001. These centers were located in the schools of public health at the Universities of Michigan, North Carolina, and Washington. The goal was to establish regional hubs of expertise in genomics and population health that built on and complimented existing university programs and developed partnerships with state and local health departments and other agencies and organizations. These partnerships would provide a foundation for a national network of resource centers that could develop the capacity for responding to future needs and opportunities related to genomics.

In 2005, OPHG awarded funding to two of the centers (Universities of Michigan and Washington) to continue their work in public health genomics for a four-year cooperative agreement period. The cooperative agreements are for non-research activities according to CDC policies. The centers’ activities focus on:

• Providing technical assistance to regional, state, and local public health agencies and other public health organizations,
  
• Providing competency-based training for the public health workforce, focusing on practical applications of genomics in population health,
  
• Identifying and responding to opportunities to serve as credible and impartial providers of information on genomics and population health for the health community, policy makers, and general public,
  
• Participating in collaborative activities with CDC and other partners, and
  
• Evaluating processes, achievements, and impact of the centers’ activities.

 

University of Michigan

The Center for Public Health and Community Genomics was established at the University of Michigan School of Public Health, in collaboration with the University of Michigan Medical School and the Michigan Department of Community Health. The Center has nine part-time staff.

Michigan’s Center has three broad goals, with an underlying emphasis on the ethical, legal, and social issues associated with the application of genomics to public health, as well as the importance of engaging the community at large in the development and implementation of public health genetics programs. These goals are to:

• Increase the genomics and public health knowledge base, with a special focus on cardiovascular disease,
  
• Provide technical assistance to state, regional, and local public health entities in the integration of genomics into public health practice, and
  
• Train members of the current and future workforce in genomics.

In addition to the funds from OPHG, the Center also receives funds from the Life Sciences Values and Society Program for projects that examine the ethical, legal, and social issues associated with the application of genomics in public health practice. In 2006, the Center was awarded a contract by NIH’s National Human Genome Research Institute to develop and implement the Mid-West Community Genetics Forum in 2007.

Key Accomplishments and Current Activities

Family History Law Project: In partnership with OPHG, Michigan’s Center conducted a comprehensive literature review of clinical genomics, family history, genetic risk, and the ethical, legal, and social implications of family history; an assessment of the guidance materials that have already been developed; a review of family history tools currently in use; and an analysis of laws and ethical principles affecting the use of family history. Information about this project was presented at the Statewide Symposium of Family History in Primary Care Practice in September 2006. Two guidebooks (one for primary care physicians and one for patients) were written to facilitate the use of family history as a part of the clinical encounter. A series of manuscripts, which will explore the legal and ethical aspects of family history in more depth, are under development.

Community-based models: In partnership with MDCH, the Center developed a community-based model of an intersectoral approach to the use and dissemination of family history.

State public health genomics model: The Center is developing a model for other state health departments to use in creating their own public health genomics programs. This model will include strategies, best practices, and a database of training tools.

Academic/practice partnerships: The Center developed a survey which will look at the aspects that make up a partnership model. This survey, as well as a series of interviews that will follow it, will serve as a catalyst to further academic/practice partnerships in the Midwest region.

Genetics/genomics curriculum: The Center developed a new curriculum addressing molecular genetics and genomics which is in being used in public high schools in Flint and Detroit. A parallel series of activities engages parents and other community members in helping to shape the curriculum to ensure relevance to the lives of the students and their parents; improve the awareness and appreciation of the community of genomic science and research; and strengthen student learning and interest in science through joint activities of students and their parents.

SAGE: The Center collaborated with OPHG to develop and convene a Stakeholders’ Advisory Group on EGAPP™ (SAGE) and assessed the role of stakeholders in implementing evidence-based practice standards.

Michigan neonatal biotrust: The Center is partnering with the Michigan Department of Community Health and the Life, Sciences, and Society Program to develop policy and community engagement background materials and recommendations.

Public health genomics APHA forum: The Center led the successful effort to establish a Public Health Genomics Forum within the American Public Health Association (APHA). The forum will bring together academics, practitioners, and community partners who desire to further genomics in public health; express public health principles in genomic research, practices, and teaching; and sponsor scientific sessions at APHA.

Conferences and meetings: In April 2008, the Michigan Center will host three meetings: an annual States, Centers and OPHG meeting, a Public Health Genomics Grand Rounds, and a Regional Genomics Conference. The Grand Rounds will focus on new and emerging genomic tools and applications for public health practice. This event will be web cast throughout the U.S. and internationally. The Regional Genomics Conference will involve public health agencies and universities from the Region V states (Michigan, Illinois, Indiana, Ohio, Minnesota, and Wisconsin) and other states and focus on facilitating partnerships to further genomics in public health practice and in university-based public health education.

 

University of Washington

The Center for Genomics and Public Health at the University of Washington has one full time and seven part time staff members. The primary goal of the Center is to integrate advances in genetic technology into public health practice and offer research and educational opportunities for public health students and professionals.

Key Accomplishments and Current Activities

Family history: 1) Washington’s Center integrated family history questions into the Washington STEPS program and into a new project focused on preterm birth in Washington. 2) Center staff has developed several publications focused on family history, including diabetes and asthma. Several additional manuscripts are in process, including a cost-utility analysis using family history information, sensitivity and specificity of relatives’ reports of family history information, and social-cultural issues in collecting family history information in Pacific Islanders and Japanese Americans. 3) Staff assisted in developing and reviewing family history questions and fact sheets for several state genomics programs, including BRFSS and PRAMS.

Educating the public health workforce: 1) The Center developed a Web-based CME module for physicians on colorectal cancer in collaboration with the Center for Health Care Education. 2) The center director frequently makes keynote addresses and give talks at professional conferences, meetings, and seminars. Topics have included family history, obesity, genomics and public health, genetics in diabetes, genetic testing and public health policy, and genetic epidemiology. 3) Eight students working on masters or doctoral degrees work part time at the Center. Center-trained students now hold positions in the Washington State Department of Health, Washington State Disability and Health Program, Puget Sound Health Alliance, and Washington State Newborn Screening Program.

Publications and reviews: Center staff members have worked with several partners to develop and submit abstracts and manuscripts based on collaborative work, including the Oregon genomics program’s work focused on the Stages of Change Model as it relates to integrating genomics into public health practice; Academic-Practice Partnerships; and Asthma Genomics: Implications of Public Health. They have also published three HuGE reviews and have three more in process. Several products focused on obesity have been produced. Two additional manuscripts are in process, one of which evaluates the influence of socioeconomic factors in response to a genetic testing direct-to-consumer marketing campaign in collaboration with CDC; the other focuses on ethical issues in newborn screening.

Spotlight newsletter: The Center produces and distributes a newsletter called Spotlight. The first issue on family history was distributed statewide in Michigan and used by the Minnesota Department of Health in a press release on family history activities. Locally, the Center distributes this newsletter at 16 city libraries and a large medical practice that has eight clinical sites.

Meetings: The Center hosted a strategic planning retreat in April 2007 for the four CDC-funded States, the Michigan Center, and OPHG to discuss priority activities and plans for the upcoming year. One of the significant outcomes of the retreat is a plan for publication of several individual state and collaborative articles in peer-reviewed journals and Morbidity and Mortality Weekly Report (MMWR) on public health genomics. The Center will coordinate a large part of this work over the next year.

Next Steps

OPHG will continue funding the four state health departments through their final year of funding, which ends in June 2008. OPHG will also continue to support the two Centers through their final year of funding, which ends in September 2008. In this last year of funding, the States, Centers, and OPHG will collaborate on writing publications on the results of the states’ surveillance and health care provider activities. Two publications on BRFSS data on family history will be submitted to MMWR this winter.

For April 2008, the States, Centers, and OPHG are planning an annual meeting, which will be hosted by the Michigan Center. This meeting will be in conjunction with two other meetings: a Public Health Genomics Grand Rounds and Regional Genomics Conference, also to be hosted by the Michigan Center.

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