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Perceptions and attitudes of patients, relatives, health professionals and regulators on bioethical issues in Brazil and the United Kingdom: the case study of the familial medullary thyroid carcinoma

Grant number: 12/21942-1
Support Opportunities:Scholarships abroad - Research Internship - Doctorate
Effective date (Start): February 24, 2013
Effective date (End): February 23, 2014
Field of knowledge:Health Sciences - Medicine - Medical Clinics
Principal Investigator:Rui Monteiro de Barros Maciel
Grantee:Maria Sharmila Alina de Sousa
Supervisor: Brian Salter
Host Institution: Escola Paulista de Medicina (EPM). Universidade Federal de São Paulo (UNIFESP). Campus São Paulo. São Paulo , SP, Brazil
Research place: University of London, England  


While research in Translational Medicine offers unique opportunities for novel approaches on prevention, diagnosis and treatment of numerous diseases, specially those with a genetic pattern of inheritance, such studies foment both scientific and ethical challenges and dilemmas, reinforcing the need to also explore the moral and social dimensions of medical practice. As such, if on the one hand the streaming benefits from the knowledge of the human genome stimuli the continuous search for new technologies, it is fundamental that these are not unlinked to the interference of its ethical, social, economical and political dimensions. Hence, it is necessary that patients and relatives affected by inherited genetic diseases, whose disease progression pattern relies on predictive genetic tests screening, are capable of taking informed decisions around their destiny and, under such circumstances, the participation of a health professional is paramount.Given such considerations, the objective of this study is to evaluate in a deep manner a few questions about both perception and attitudes of patients, relatives, healthcare professionals and regulators directly involved with research, diagnosis and treatment of Multiple Endocrine Neoplasia type 2 (MEN2) and with Familial Medullary Thyroid Carcinoma (FMTC), diseases caused by mutations in the RET gene. For such purpose, we will search for better and deeper comprehension of both benefits and/or losses from the extensive use of predictive genetic tests for prevention, diagnosis and prognosis under the bioethical sociocultural, scientific, institutional, political and humanistic perspectives and, eventually, we will propose alternatives for the current practices in this field.Within this research project we have been studying the population of patients and relatives diagnosed with MEN2 and/or FMTC, being followed in the context of our consortium BRASMEN, which has reached around 1,000 individuals, and the health professionals involved in their care. We now turn to the following specific objectives:1) Prospection, development and implementation of qualitative approach to our research by employing Oral Life History Interviews at those cohorts of patients and relatives, as well as with health professionals from the BRASMEN consortium centres, and with regulators in the field in Brazil and the UK, according to methods and partial results outlined at our annual report submitted to FAPESP in August/2012, via collaborative work established with the group at the Department of Political Economy at King's College London;2) Investigation of a Brazilian profile of comprehension and adherence to the new technologies streaming from the Translational Medicine research in cancer in the post-genomic era, within the context of our BRASMEN consortium, aiming to qualitative investigate both perceptions and attitudes of patients, relatives, health professionals and regulators, about bioethical issues, such as familial inherited cancer, predictive genetic tests and Preventive Medicine, from each party in relation to the others;3) Propose to Brazilian regulatory agencies, from the critical analysis of theories and implemented models in the UK, more adequate approaches to the national context to reformulate or rethink the modus operandi of the clinical assistance, research and higher education systems to health professionals, in different areas and levels, to contemplate the current operational dilemmas in routine clinical, laboratorial and academic research on prevention, diagnosis and treatment of patients and relatives carrying inherited and/or familial types of cancer, based on the illustrative example of FMTC and/or MEN2. (AU)

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Scientific publications
(References retrieved automatically from Web of Science and SciELO through information on FAPESP grants and their corresponding numbers as mentioned in the publications by the authors)
MARTINS-COSTA, M. CECLIA; CUNHA, LUCAS L.; LINDSEY, SUSAN C.; CAMACHO, CLEBER P.; DOTTO, RENATA P.; FURUZAWA, GILBERTO K.; SOUSA, M. SHARMILA A.; KASAMATSU, TERESA S.; KUNII, ILDA S.; MARTINS, MRCIO M.; et al. M918V RET mutation causes familial medullary thyroid carcinoma: study of 8 affected kindreds. Endocrine-Related Cancer, v. 23, n. 12, p. 909-920, . (12/21942-1, 06/60402-1, 14/06570-6)
MARIA SHARMILA ALINA DE SOUSA; DANTE MARCELLO CLARAMONTE GALLIAN; RUI MONTEIRO DE BARROS MACIEL. De ‘Mim’ para ‘Nós’: solidariedade e biocidadania no sistema brasileiro de inovação em medicina de precisão para o câncer. Saúde debate, v. 43, p. 114-132, . (12/21942-1)
MACIEL, RUI M. B.; CAMACHO, CLEBER P.; ASSUMPCAO, LIGIA V. M.; BUFALO, NATASSIA E.; CARVALHO, ANDRE L.; DE CARVALHO, GISAH A.; CASTRONEVES, LUCIANA A.; DE CASTRO JR, FRANCISCO M.; CEOLIN, LUCIELI; CERUTTI, JANETE M.; et al. Genotype and phenotype landscape of MEN2 in 554 medullary thyroid cancer patients: the BrasMEN study. ENDOCRINE CONNECTIONS, v. 8, n. 3, p. 289-298, . (14/06570-6, 06/60402-1, 13/01476-9, 12/21942-1)

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