The role of state public health agencies in genetics and disease prevention: results of a national survey.

OBJECTIVES: The onset and severity of the clinical expression of most diseases that are of public health importance are influenced by genetic predisposition. The ability to assess human genetic predisposition for many diseases is increasing rapidly. Therefore, state public health agencies should be incorporating new developments in genetics and disease prevention into their core functions of assessment, policy development, and assurance. The authors assessed the status of this process. METHODS: The Council of State and Territorial Epidemiologists (CSTE) surveyed states about projects and concerns related to genetics and public health activities. Respondents were the Health Officer, the Maternal and Child Health/Genetics Program Director, the Chronic Disease Program Director, and the Laboratory Director. Where applicable, responses were categorized into assessment, policy development, and assurance functions. RESULTS: Thirty-eight (76%) state health departments responded. Ongoing genetics activities were assurance (82%), assessment (17%), and policy development (2%). In contrast, Health Officers responded that future genetics activities would be distributed differently: assurance, 41%; assessment, 36%; and policy development, 23%. Future assurance activities would be largely educational. Topics of interest and recently initiated activities in genetics were primarily assessment functions. Funding was the greatest concern, followed by lack of proven disease prevention measures and outcomes data. CONCLUSIONS: State health departments recognize a need to realign their activities to meet future developments in genetics. Lack of adequate resources, proven disease prevention measures, and outcomes data are potential barriers. Public health agencies need to develop a strategic plan to meet the opportunities associated with the development and implementation of genetic tests and procedures.

Survey of pediatrician practices in retrieving statewide authorized newborn screening results.

OBJECTIVE: Mandated state newborn screening programs for the approximately 4 million infants born each year in the United States involves the following 5 components: 1) initial screening, 2) immediate follow-up testing of the screen-positive newborn, 3) diagnosis confirmation (true positive versus false positive), 4) immediate and long-term care, and 5) evaluation of all of the components of the system, including process and outcomes measures. Smooth functioning of this system requires pretest education of the parents as well as education and involvement of all health care providers who interact with the newborn screening system. Although extensive literature is available concerning public health aspects, technical standards/protocols, and discussion of the interfaces among the 5 components of the system, little information is available regarding physician awareness, involvement, and interactions with the system. The objective of this study was to determine, through a survey, primary care pediatricians' satisfaction with their state's newborn screening program. This was reflected in survey questions that asked how pediatricians were notified of the results of newborn screening tests that were performed on infants in their practice. METHODS: Two thousand questionnaires were sent to primary care pediatricians in all 50 states and the District of Columbia regarding their practices in retrieving statewide newborn screening results. Of the 2000 surveys, 574 (29%) responses from primary care pediatricians who care for at least 1 to 5 newborns each week form the basis of this report. Also reported are the commentaries of the physicians concerning their specific practices, overall assessment of the system, and ideas for improvement. RESULTS: Physicians reported their general satisfaction with the newborn screening system's ability to retrieve screen-positive infants for follow-up testing. However, communication and partnership with the primary care pediatrician regarding accessibility and timely retrieval of newborn screening test results was deemed less than optimal. Thirty-one percent of respondents indicated that notification for screen-positive test results was greater than 10 days, whereas 26% indicated that they do not receive the results of screen-negative tests and need to develop office procedures (contact birth hospital or state laboratory) to obtain results. Twenty-eight percent indicated that they do not actively seek results of newborn screening for their patients and presume that "no news is good news." Barriers to retrieving test results included that infants were born at hospitals where the physician does not have privileges, there were new transfers to the practice, infants were born in other states, personnel time was needed to track results, and there was a lack of a cohesive communication/reporting system that includes the primary care physician as an integral partner in the newborn screening communication process. Ninety-two percent of physicians would welcome an enhanced state system with direct communication to the primary care pediatrician as well as the birth hospital. CONCLUSION: Pediatricians recognize and endorse the benefits of newborn screening and believe that they play an important role in the efficient functioning of the system. An enhanced physician partnership with the newborn screening program will enable the timely follow-up of the screen-positive newborn for confirmatory testing. All test results need to be communicated to the pediatrician in a timely and efficient manner: 7 days for screen-positive results and 10 to 14 days for all results. Newborn screening test results of new patients who enter the practice should be available at the time of the first well-infant visit, ideally by 2 weeks of age. The majority of primary care pediatricians acknowledge the need to establish office protocols for the retrieval of newborn screening test results and would welcome an enhanced direct communication system with the state newborn screening program.

Should the vaccine injury compensation program be expanded to cover adults?

In 1996, the National Vaccine Advisory Committee (NVAC) asked for a review of the pros and cons of including adult influenza and pneumococcal vaccines in the Vaccine Injury Compensation Program (VICP). The authors, as staff to the subcommittees charged with undertaking this assessment, looked at the following questions: (a) Would inclusion in VICP of these two vaccines, used primarily for adults, increase adult vaccination levels? (b) Is this Federal involvement warranted based on the liability burden for these vaccines? (c) Does the risk of adverse events following vaccinations warrant inclusion of these vaccines? (d) Is there a consensus among stakeholders favoring their inclusion? To address these questions, the authors reviewed information on adult vaccines, including data on l lawsuits filed and reports of injuries, and sought input from interested groups. They found no evidence that the use of influenza and pneumococcal vaccines would increase if they were included in VICP. They found a low liability burden for these vaccines, that serious adverse events were rare, and that no consensus existed among stakeholders. After considering the staff report, NVAC chose, in 1996, not to advise the Department of Health and Human Services to include adult vaccines in VICP.