ACONSELHAMENTO GENÉTICO: IMPLICAÇÕES ÉTICAS

Sérgio Grigoleto

Resumo


O artigo apresenta o aconselhamento genético e os diversos elementos que o compõe. Também em quais casos de dificuldades reprodutivas há indicação clínica para a busca do aconselhamento genético e as principais implicações éticas deste tipo de aconselhamento, bem como as dificuldades em conjugar os princípios éticos que devem nortear esta prática com determinadas situações específicas, como por exemplo, questões culturais e religiosas.

 

Palavras-chave: Conflito de interesse. Autonomia do paciente. Comunicação de diagnóstico.

 

Genetic Counseling: Ethical Implications

 

Abstract: The article presents the genetic counseling and the various elements that compose it. Also in which cases of reproductive difficulties there is clinical indication for the search for genetic counseling and the main ethical implications of this type of counseling, as well as the difficulties in conjugating the ethical principles that should guide this practice with certain specific situations, such as, cultural and religious issues.

 

Keywords: Conflict of interest. Patient autonomy. Diagnostic communication.


Texto completo:

Download PDF

Referências


ANDERSON, G. Nondirectiveness in prenatal genetics: patients read between the lines. Nursing Ethics, v. 6, n. 2, p. 126-136, mar. 1999.

ASHLEY B. M.; O’ROURKE K. D. Ethics of Health Care. 3. ed. Washington: Georgetown University Press, 2002.

BEAUCHAMP, T.; CHILDRESS, J. Principles of biomedical ethics. 6 ed. New York: Oxford University Press, 2009.

BOTTORFF J. L. et al. Communicating cancer risk information: the challenges of uncertainty. Patient Education and Counseling, v. 33, n. 1, p. 67-81, jan. 1998.

BUCCI, L. M.; et al. Osservazioni etiche e implicazioni medico-legali in materia di “test genetici”. Medicina e Morale, Roma, n. 4, p. 799-810, jul/ag. 2005.

CAPITÁN JURADO, M.; CABRERA VÉLEZ, R. La consulta preconcepcional en Atención primaria. Evaluación de la futura gestante. Revista de Medicina Familiar y comunitaria, v. 11, n. 4, p. 61-77, abr. 2001.

CLAUSEN, H. et al. «Psychological and social impact of carrier screening for cystic fibrosis among pregnant women - a pilot study. Clinical Genetics, n. 4, v. 49, p. 200-205, abr. 1996.

CRISTOFARI, F. Autodeterminazione nelle scelte procreative: identità di genere e famiglia, Medicina e Morale, Roma, n. 3, p. 555-557, 2007.

DAVEY H. M. et al. Women’s preferences for and views on decision-making for dianostic tests. Social Science & Medicine, v. 9, n. 58, p. 1699-1707, 2004.

DINIZ, D.; GUEDES, C. Confidencialidade, aconselhamento genético e saúde pública: um estudo de caso sobre o traço falciforme. Caderno de Saúde Pública. Rio de Janeiro, v. 21, n. 3, p. 747-755, mai/jun 2005.

DIXONS. D.; KONHEIM-KALKSTEIN Y. L. Risk Communication: A complex process. In: LEROY B. S.; VEACH P. M.; BARTELS D. M. (edd.) Genetic Counseling Practice. Advanced concepts and skills. Hoboken: Wiley-Blackwell, 2010.

FRASER, F. C. Genetic Counseling. Americam Journal Human Genetic, Houston, v. 26, n. 5 p. 636-661, 1974.

GAMBINO G. Diagnosi Prenatale. Scienza, etica e diritto a confronto Napoli: Edizione Scientifiche Italiane, 2003.

GILBAR, R. Communicating genetic information in the family: the familial relationship as the forgotten factor. Journal of Medical Ethics, v. 33, n. 7, p. 390-393, jul. 2007.

GUEDES, C.; DINIZ, D. A Ética na História do Aconselhamento Genético: um Desafio à Educação Médica, Revista Brasileira de Educação Médica, Rio de Janeiro, v. 33, n. 2, p. 247-252, apr./June 2009.

HALLOWELL N. et al. Balancing autonomy and responsability: the ethics of generating and disclosing genetic information. Journal of Medical Ethics, v. 29, n. 2, p. 74-79, abr. 2003.

HARPER, P. S. Consulenza genetica pratica. Padova: Piccin, 1988.

HEDGECOE, A. M. It’s money that matters: the financial context of ethical decision-making in modern biomedicine, Social Health Illness, Sussex, v. 28, n. 6, p. 768-784, set. 2006.

HEYD, D. Genethics: moral issues in the creation of people. Berkley: University of California Press, 1992.

HODGSON, J.; SPRIGGS, M. A practical account of autonomy: why genetic counseling is especially well suited to the facilitation of informed autonomus decision making, Journal of Genetic Counseling, v. 14, n. 2, p. 88-97, abr. 2005.

HOGGE, J.; HOGGE, W. A. Preconception Genetic Counseling. Clinical Obstetrics and Gynecology, v. 36, n. 4, p. 751-762, dez. 1996.

JONSEN A. R.; SIEGLER M.; WINSLADE W. J. Etica clinica. Un approcio pratico alle decisioni etiche in medicina. Milano: McGraw-Hill, 2003.

JORDE L. B.et al. Genética médica. Rio de Janeiro: Guanabara Koogan, 1999.

LOADER, S. et al. Prenatal screening for hemoglobinopaties. II. Evaluation of conseling. American Journal of Human Genetics, v. 48, n. 3. p. 447-451, mar. 1991.

MAECKELBERGHE, E. Aconselhar profissionalmente: aconselhamento genético e autonomia. In: DINIZ, D. (Org.), Admirável nova genética: bioética e sociedade. Brasília: Unb; LetrasLivres, 2005, p. 311-328.

MANSUETO, G.; ZECCA, A. Diritto a conoscere in genetica medica. Medicina e Morale, v. 1, n. 22, p. 47-51, 1982.

MELE V.; MORGANI A. R.; GIORLANDINO C. Etica pratica e counselling genetico. In GIORLANDINO, C. Trattato di diagnosi prenatale e terapie fetale. Roma: CIC Edizioni Internazionali, 1997, p. 171-173.

MICHIE, S.; SMITH, D.; MARTEAU, T. Prenatal tests: how are women deciding?, in Prenatal Diagnosis, v. 19, n. 8, p. 743-748, aug. 1999.

MILUNSKY J. M.; A. MILUNSKY, A. Genetic counseling in perinatal medicine. Obstetrics & Gynecology Clinics. Boston, v. 24 , n. 1, p. 1-17, mar. 1997.

MOUMJID N. et al. Shared decision making in the medical encounter. Are we all talking about the same thing? Medical Decision Making, v. 5, n. 27, p. 539- 546, sept/oct. 2007.

PARENS, E.; A. ASCH, A. The disability rights critique of prenatal genetic testing. Reflections and recommendations, Mental Retardation and Developmental Disabilities Research Reviews, v. 9, n. 1. p. 40-47, feb.2003.

PARKER, M.; LUCASSEN, A. M. Concern for families and individuals in clinical genetics. Journal of Medical Ethics, v. 29, n. 2, p. 70-73, apr. 2003.

PEARN, J. H. Patient’s subjective interpretation of risks offered in genetic counseling. Journal of Medical Genetics, London, V. 10, n. 2, p. 129-134, jun. 1973.

PETERS E. et al. Less is more in presenting quality information to consumers. Medical Care Research and Review, v. 64, n. 2, p. 169-190. apr. 2007.

PINA-NETO, J. M. Genetic counseling. Jornal de Pediatria, Rio de Janeiro, v. 84, n. 4, p. 20-26, abr. 2008.

RAMALHO, A. S.; MAGNA, L. A. Aconselhamento genético do paciente com doença falciforme, Revista Brasileira de Hematologia e Hemoterapia, n. 29, v. 3, p. 229-232, 2007.

RAY, J. G.; O’BRIEN, T. E.; CHAN, W. S. Preconception care and the risk of congenital anomalies in the offspring of women with diabetes mellius: a meta-analysis. Oxford Journals Medicine, v. 94, n. 8, p. 435-444, aug. 2001.

REGATEIRO, F. J. Manual de Genética Médica. Coimbra: Imprensa da Universidade de Coimbra, 2007.

RESTA, R. G. Complicated Shadows: a critique of autonomy in genetic counseling. In: LEROY, B. S.; VEACH, P. M.; BARTELS, D. M. (Ed.). Genetic Conseling Practice. Advanced concepts and skills, Hoboken: Wiley-Backwell, 2010.

REYNA V. F. How people make decisions that involve risk: a dual processes approach. Current Directions in Psychological Science, Chicago, v. 13, n. 2 , p. 60-66, apr. 2004.

RIBEIRO, E. M. Aconselhamento genético, Revista Brasileira de Medicina, v. 58, n. 7, p. 490-496, 2001.

SERRA, A. La consulenza genetica prima della diagnosi prenatale: un obbligo deontologico, Medicina e Morale, v. 5, n. 47 p. 903- 921, 1997.

SGRECCIA, E.; DI PIETRO, M. L. Fondamenti bioetici della diagnostica e della terapia fetale. In: NOIA, G.; CARUSO, A.; MANCUSO, S. Le terapie invasive. Roma: Universo, 1998.

SHERIDAN S. L.; HARRIS, R. P.; WOOLF S. H. Shared decision-making about screening and chemoprevention: a suggested approach from the U.S. Preventive Task Force. American Journal of Preventive Medicine, Washington, v. 1, n. 26 1, p. 56-66, jan. 2004.

SINGER, G. H. S. Clarifying the duties and goals of genetic counselors: implications for nondirectiveness. In: GERT, B. (Ed.), Morality and the new genetics: a guide for students and health care providers. London: Jones and Bartlett Publishers International, 1996, p. 125-145.

STOL, Y. H. et al. Informing family members about a hereditary predisposition to cancer: attitudes and practices among clinical geneticists. Journal of Medical Ethics, v. 36, n. 7, p. 391-395, jul. 2010.

SURBONE, A. The ethical challenge of genetic testing for breast cancer. Medicina e Morale, v. 3, p. 479-480. 1999.

SUTER, S. M. Value neutrality and nondirectiveness: comments on “future directions in genetic counseling”. Kennedy Institute Ethics Journal, v. 8, n. 2, p. 161-163, jun. 1998.

TAI, M. C.; TSAI, T. P. Who makes the decision? Patient’s autonomy vs. Paternalism in a Confucian society, Croatian Medical Journal, v. 44, n. 5, p. 558-561, out. 2003.

WALKER, A. P. The Practice of Genetic Counseling. In: UHLMANN, W. R.; SCHUETTE, J. L.;– YASHAR, B. M. (Ed.). A Guide to Genetic Counseling, Hoboken: Wiley- Blackwell, 2009.

WHITE, M. T. Decision-making through dialogue: reconfiguring autonomy in genetic counseling. Theoretical Medicine and Bioethics, v. 19, n. 1, p. 5-19, jan. 1998.

WHITE, M. T. Making responsible decisions. An interpretative ethic for genetic decision making. Hastings Center Report, v. 29, n. 1, p. 14-21, jan/feb. 1999.


Apontamentos

  • Não há apontamentos.




 



Licença Creative Commons
Este obra está licenciado com uma Licença Creative Commons Atribuição-NãoComercial-CompartilhaIgual 4.0 Internacional.

 

Indexada em: