Cultural aspects of cancer genetics: setting a research agenda

Background-Anecdotal evidence suggests that people from non-Anglo-Celtic ba ckgrounds are under-represented at familial cancer clinics in the UK, the U SA, and Australia. This article discusses cultural beliefs as a potential k ey barrier to access, reviews previous empirical research on cultural aspec ts of cancer genetics, draws implications from findings, and sets a researc h agenda on the inter-relationships between culture, cancer genetics, and k inship. Methods-The CD-ROM databases MEDLINE: PsychLIT, CINAHL, and Sociological Ab stracts were searched from 1980 onwards. Results-Cultural aspects of cancer genetics is the focus of an emerging bod y of publications. Almost all studies assessed African-American women with a family history of breast cancer and few studies included more diverse sam ples, such as Americans of Ashkenazi Jewish background or Hawaiian- and Jap anese-Americans. Our analysis of published reports suggests several directi ons for future research. First, an increased focus on various Asian societi es appears warranted. Research outside North America could explore the exte nt to which findings can be replicated in other multicultural settings. In addition, control group designs are likely to benefit from systematically a ssessing culture based beliefs and cultural identity in the "majority cultu re" group used for comparative purposes. Conclusion-More data on which to base the provision of culturally appropria te familial cancer clinic services to ethnically diverse societies are need ed. Empirical data will assist with culturally appropriate categorisation o f people from other cultures into risk groups based on their family histori es and provide the basis for the development of culturally appropriate pati ent education strategies and materials.