A toolkit for incorporating genetics into mainstream medical services: Learning from service development pilots in England

Background: As advances in genetics are becoming increasingly relevant to mainstream healthcare, a major challenge is to ensure that these are integrated appropriately into mainstream medical services. In 2003, the Department of Health for England announced the availability of start-up funding for ten 'Mainstreaming Genetics' pilot services to develop models to achieve this. Methods: Multiple methods were used to explore the pilots' experiences of incorporating genetics which might inform the development of new services in the future. A workshop with project staff, an email questionnaire, interviews and a thematic analysis of pilot final reports were carried out. Results: Seven themes relating to the integration of genetics into mainstream medical services were identified: planning services to incorporate genetics; the involvement of genetics departments; the establishment of roles incorporating genetic activities; identifying and involving stakeholders; the challenges of working across specialty boundaries; working with multiple healthcare organisations; and the importance of cultural awareness of genetic conditions. Pilots found that the planning phase often included the need to raise awareness of genetic conditions and services and that early consideration of organisational issues such as clinic location was essential. The formal involvement of genetics departments was crucial to success; benefits included provision of clinical and educational support for staff in new roles. Recruitment and retention for new roles outside usual career pathways sometimes proved difficult. Differences in specialties' working practices and working with multiple healthcare organisations also brought challenges such as the 'genetic approach' of working with families, incompatible record systems and different approaches to health professionals' autonomous practice. 'Practice points' have been collated into a Toolkit which includes resources from the pilots, including job descriptions and clinical tools. These can be customised for reuse by other services. Conclusions: Healthcare services need to translate advances in genetics into benefits for patients. Consideration of the issues presented here when incorporating genetics into mainstream medical services will help ensure that new service developments build on the body of experience gained by the pilots, to provide high quality services for patients with or at risk of genetic conditions

Chinese Americans’ Views and Use of Family Health History: A Qualitative Study

Objective Family health history (FHH) plays a significant role in early disease detection and preven- tion. Although Asian Americans are the fastest growing U.S. immigrant group, no data exists regarding Chinese Americans’ (the largest Asian subgroup) views and use of FHH. This study examines this important issue. Methods Forty-nine adults from southern U.S. Chinese American communities participated in this qualitative, semi-structured, in-depth interview study. Interviews were audio recorded, tran- scribed, and analyzed with a content analysis approach. Results Although the majority of participants perceived the importance of collecting FHH, most lacked FHH knowledge and failed to collect FHH information. Barriers affecting FHH collec- tion and discussion among family members included long-distance separation from family members, self-defined “healthy family,� and Chinese cultural beliefs. Lack of doctors’ inqui- ries, never/rarely visiting physicians, self-defined “healthy family,� perceived insignificance of discussing FHH with doctors, and Chinese cultural beliefs were the obstacles in commu- nicating FHH with physicians. Conclusions Chinese Americans had limited usage of their FHH and faced cultural, distance, knowl- edge-, and healthcare system-related barriers that influenced their FHH use. Developing FHH education programs for Chinese Americans is highly recommended

Findings from a community education needs assessment to facilitate the integration of genomic medicine into primary care

To assess the lay public's knowledge of, and beliefs about, genetics and genetic testing to create an educational initiative that promotes acceptance and utilization of genomic medicine in primary health care. A telephone survey of English-speaking adults in Guilford County, North Carolina was conducted in 2006 to identify community members' educational needs regarding genetics and genetic testing. Most respondents recognized the connection between family history and disease risk. A majority did not appear to know about: (1) basic principles of inheritance, (2) laws prohibiting genetic discrimination, and (3) the availability and limitations of genetic tests. About 25% thought that they could not reduce their risk if they have a genetic predisposition for disease. Knowledge level was affected by education, experience, age, and race. If primary care providers use family history as a risk assessment tool, community education programs must address (1) the collection of family health history, (2) legislation regarding genetic nondiscrimination, (3) benefits and limitations of existing genetic tests, and (4) genetic determinism. Programs emphasizing practical, "how to" information can be targeted to individuals likely to collect family history information and address misperceptions about discrimination, testing, and determinism