International Perspectives on Genetic Counseling and Testing for Breast Cancer Risk

Issue title: Genetic Counseling in Breast cancer

Guest editors: Beth N. Peshkin

Article type: Research Article

Authors: Meiser, Bettina^{a; *} | Gaff, Clara^b | Julian-Reynier, Claire^c | Biesecker, Barbara B.^d | Esplen, Mary Jane^e | Vodermaier, Andrea^f | Tibben, Aad^g

Affiliations: [a] Psychosocial Research Group, Department of Medical Oncology, Prince of Wales Hospital, Dickinson 3, Randwick, NSW 2031, Australia | [b] Institute of Medical Genetics, Cardiff University, UK. Genetic Health Services Vict., Victoria, Australia | [c] INSERM UMR379, Research Unit on Epidemiology and Social Sciences applied to Medical Innovation, Marseille, France | [d] Social and Behavioral Research Branch, National Human Genome Research Institute, NIH, Bethesda, MD, USA | [e] Mary Jane Esplen, Behavioral Sciences and Health Division, Toronto General Research Institute, University Health Network, 200 Elisabeth St., EN9-242b, Toronto, Ont., M5G 2C4, CA, Canada | [f] Department of Obstetrics and Gynaecology University of Munich, Grosshadern, Marchioninistr. 15, 81377 Munich, Germany; and Toronto General Research Institute, University Health Network, 200 Elisabeth St., EN9-242b, Toronto, Ont., M5G 2C4, CA, Canada | [g] Centre for Human and Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands | Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC 20007, USA

Correspondence: [*] Corresponding author: Bettina Meiser, Psychosocial Research Group, Department of Medical Oncology, Prince of Wales Hospital, Dickinson 3, Randwick, NSW 2031, Australia. Tel.: +61 2 9382 2638; Fax: +61 2 9382 3372; E-mail: [email protected]

Abstract: Familial cancer services have been developed in many countries in response to a rapidly evolving demand for genetic counseling and testing for breast cancer risk. This article presents a synthesis of the literature on international aspects of genetic counseling and testing and discusses similarities and differences in the provision of genetic counseling and testing, taking seven countries with well established familial cancer services as a case study (Australia, Canada, France, Germany, Netherlands, UK and US). Potential international differences are discussed in terms of: provider and patient attitudes to genetic counseling and genetic testing; utilization rates of genetic testing and prophylactic surgery; and the psychological impact of genetic testing for breast cancer risk. The comparative analyses of utilization rates and the psychological impact of testing indicate a wide range of variability in uptake rates and psychological outcomes, most likely reflecting sample variability and methodological differences in measurement. International comparison studies using controlled designs would be required to ascertain whether international differences exist, and to disentangle the differential role of clinical, individual and family context factors, on the one hand, and the cultural and health system-related factors unique to particular countries, on the other.

Keywords: Genetic testing, genetic counseling, hereditary breast cancer, international differences

DOI: 10.3233/BD-2007-27107

Journal: Breast Disease, vol. 27, no. 1, pp. 109-125, 2007