Cancer Genetic Counseling in Public Health Care Hospitals: The Experience of Three Brazilian Services

In Brazil, genetic counseling is usually available in university-affiliated medical genetics services located in tertiary centers that provide cancer diagnosis and treatment. The present study aims to describe the structure and characteristics of three cancer genetic services in Brazilian public health care hospitals and discuss alternatives for the identification and prevention of hereditary cancer syndromes in developing countries. The three services presented here are similar in their structure, routine procedures for cancer risk estimation and criteria for the indication of genetic testing. They all demand that genetic counseling be an essential part of the cancer risk evaluation process, before and after cancer predisposition testing. However, when high-risk patients are identified, all services describe difficulties in the access and continuity of genetic and medical services to the patient and his/her at-risk relatives. The services differ in the type of population served, reflecting distinct referral guidelines. This study emphasizes the importance of the creation of new cancer genetic services in other Brazilian regions and the necessity for establishing a collaborative network to facilitate the diagnosis and research of cancer genetic syndromes.

[1]  C. Kuhl,et al.  Management of women at high risk for breast cancer: new imaging beyond mammography. , 2005, Breast.

[2]  M. Daly,et al.  How to establish a high-risk cancer genetics clinic: Limitations and successes , 2005 .

[3]  K. Offit,et al.  Prevention and management of hereditary breast cancer. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[4]  B. Haffty,et al.  Conservative management of breast cancer in BRCA1/2 mutation carriers. , 2004, Clinical breast cancer.

[5]  A. Camargo,et al.  High frequency of novel germline mutations in the VHL gene in the heterogeneous population of Brazil , 2003, Journal of medical genetics.

[6]  Jane Dutra Sayd Os sentidos da integralidade na atenção e no cuidado à saúde , 2002 .

[7]  J. Satagopan,et al.  Risk-reducing salpingo-oophorectomy in women with a BRCA1 or BRCA2 mutation. , 2002, The New England journal of medicine.

[8]  Susan L Neuhausen,et al.  Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. , 2002, The New England journal of medicine.

[9]  P. Butow,et al.  Long-term outcomes of genetic counseling in women at increased risk of developing hereditary breast cancer. , 2001, Patient education and counseling.

[10]  V. Penchaszadeh Community Genetics in Latin America: Challenges and Perspectives , 2001, Public Health Genomics.

[11]  Jaana M. Hartikainen,et al.  Multiple founder effects and geographical clustering of BRCA1 and BRCA2 families in Finland , 2000, European Journal of Human Genetics.

[12]  T. Rebbeck,et al.  Prophylactic surgery in women with a hereditary predisposition to breast and ovarian cancer. , 2000, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[13]  R. Giugliani,et al.  Services for the Prevention and Management of Genetic Disorders and Birth Defects in Developing Countries , 2000, Public Health Genomics.

[14]  D. Carter Clinical Cancer Genetics: Risk Counseling and Management. , 1999 .

[15]  D J Schaid,et al.  Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. , 1999, The New England journal of medicine.

[16]  S. Narod,et al.  What you don't know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing. , 1998, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[17]  J Chang-Claude,et al.  Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium. , 1998, American journal of human genetics.

[18]  B. Weber,et al.  Establishing a cancer risk evaluation program. , 1997, Cancer practice.

[19]  I. Lerer,et al.  The founder mutations 185delAG and 5382insC in BRCA1 and 6174delT in BRCA2 appear in 60% of ovarian cancer and 30% of early-onset breast cancer patients among Ashkenazi women. , 1997, American journal of human genetics.

[20]  R. Croyle,et al.  Emotional and behavioral responses to genetic testing for susceptibility to cancer. , 1996, Oncology.

[21]  J. Holland,et al.  Psychological distress and surveillance behaviors of women with a family history of breast cancer. , 1992, Journal of the National Cancer Institute.

[22]  F. Hecht Genetic counseling: Psychological dimensions , 1980 .

[23]  S. Kessler 5 – The Genetic Counseling Session , 1979 .

[24]  H. Levy Newborn Metabolic Screening: Past and Prospect , 1975 .

[25]  J. Pearn Patients' subjective interpretation of risks offered in genetic counselling. , 1973, Journal of medical genetics.