- Promoted National Leadership in Genetics and Public Health
- Developed Scientific Information for Public Health Action
- Disseminated Information on the Impact of Genetics on Disease Prevention
- Provided Training Opportunities to the Public Health Workforce
The mission of the Office of Public Health Genomics is to integrate advances in human genetics into public health research, policy and program development, and evaluation. Highlights of the Office's 1999 accomplishments include the following:
Represented CDC at national policy-setting panels. This included representing CDC at the Health and Human Services (HHS) Secretary's Advisory Committee on Genetic Testing.
- Chaired an HHS Interagency Working Group to establish a national framework for collecting, analyzing, and disseminating data on genetic tests. The group conducted two 1-day workshops on cystic fibrosis and hemochromatosis. These were used as models to determine the data-collection requirements for evaluating the validity and utility of genetic tests. The group is currently conducting two feasibility studies to develop a model of public-private partnership to collect data on genetic tests.
- Convened discussions forums on integrating genetics into existing CDC programs. These forums included meetings of the Genetics Oversight Committee (consisting of CDC center and office directors) to review CDC-wide activities in genetics, as well as meetings of the CDC Genetics Implementation Team (consisting of representatives from CDC programs) to assess ways of integrating genetics into CDC research, policy, and programs.
- Formed and extended partnerships with national, state, academic, and professional organizations. This involved participating in ongoing discussions toward an interagency agreement with various HHS partners, sponsoring planning and awareness raising efforts through national public health organizations, participating in meetings with several state public health program leaders, and visiting several schools of public health.
- Co-Sponsored the Second National Conference on Genetics and Disease Prevention coordinated by the Association of State and Territorial Health Officials along with the Health Resources Service Administration (HRSA) and the National Human Genome Research Institute (NHGRI).
- Participated in conferences and workshops. Office staff participated as invited speakers or panelists in numerous national professional and scientific conferences. Also delivered lectures at several academic institutions on the implications of gene discoveries in improving health and preventing disease.
- Funded two extramural prevention research projects on using genetic information to improve health and prevent disease. The two funded projects were "Gene-Environment Interactions in Cardiovascular Disease" (University of Texas) and "Educating Families About Colon Cancer Genetic Risk" (University of Rochester).
- Provided technical assistance to Georgia to evaluate existing data from its newborn screening program, 1998. Results of this surveillance evaluation revealed that, as with other newborn screening programs, the Georgia program does not have sufficient data with which to evaluate short- and long-term performance measures. Recommendations for strengthening data linkages were published in the December 10, 1999 issue of the Morbidity and Mortality Weekly Report.
- Collaborated with the Cystic Fibrosis Foundation (CFF) to evaluate whether early diagnosis of cystic fibrosis (CF) in asymptomatic neonates had an effect on growth, pulmonary function, and pseudomonas acquisition in the first 10 years of life. Longitudinal data from the CFF national registry revealed that early diagnosis of CF through newborn screening was neither associated with delay in pseudomonas acquisition nor with slowed pulmonary function impairment.
- Analyzed data from the CDC Healthstyles Survey, a US population-based survey, to evaluate public opinion and attitudes about donating and storing blood for genetic research. This study revealed substantial public concern about participating in genetic research and will be helpful in developing communication messages about genetics.
- Provided technical assistance to the Council of State and Territorial Epidemiologists (CSTE) in finalizing a multistate survey on the status of genetics in public health programs. This report revealed an emerging need for public health training in genetics and for integrating genetics into various public health programs beyond the traditional genetics programs in newborn screening, birth defects, and disabilities.
- Published the Genomics and Health Weekly Update via the Genetics Listserv and on the OPHG Web site. This update features weekly information for public health professionals about the impact of gene discoveries on disease prevention and public health.
- Developed a CDC-wide communications plan that outlines the agency's approach to communicating with various audiences, including public health officials, researchers, health care providers, and the general public.
- Enhanced the Human Genome Epidemiology Network [HuGENet™] by publishing five HuGE reviews, establishing an editorial board, and partnering with several journals. HuGE Net serves as a forum for information exchange on the epidemiology of genetic variation and as an online knowledge base about the impact of genetic variation on health and disease.
- Co-edited a book on Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease. The book, which will be the first comprehensive genetics and public health text, is scheduled for publication in 2000. Portions of the book will be published online at the OPHG Web site.
- Developed and presented a course entitled "Genetics and Disease Prevention: An Introductory Course" on March 4-5, 1999. Participants included 30 CDC staff members and 25 public health representatives from 15 states who discussed emerging issues in genetics and how they can be incorporated in public health program planning.
- Developed and presented a course entitled "Genetics and Disease Prevention: A Scientific Basis for Public Heath Action" on September 23-24, 1999. We developed new case studies for this course, and participants learned to identify and apply the scientific concepts related to epidemiology, laboratory sciences, prevention effectiveness and communication sciences.
- Conducted a 1-day workshop entitled "Advances in Human Genetics: Relevance to Public Health Practice" at the annual CSTE conference in June 1999.
- Sponsored a CDC-wide Distinguished Speakers Series on various genetics topics. In 1999, five speakers addressed national issues (including human genome mapping; law, ethics, and policy; human environmental susceptibility; and the challenges of communicating information about genetics).
- Provided five new Career Development Opportunities in Genetics at CDC. This program is sponsored by the Association for Teachers of Preventive Medicine (ATPM) as a 3-year assignment in different CDC programs.