Ethical dilemmas in genetic testing: examples from the Cuban program for predictive diagnosis of hereditary ataxias.
Predictive testing protocols are intended to help patients affected with hereditary conditions understand their condition and make informed reproductive choices. However, predictive protocols may expose clinicians and patients to ethical dilemmas that interfere with genetic counseling and the decision making process. This paper describes ethical dilemmas in a series of five cases involving predictive testing for hereditary ataxias in Cuba. The examples herein present evidence of the deeply controversial situations faced by both individuals at risk and professionals in charge of these predictive studies, suggesting a need for expanded guidelines to address such complexities.
Predictive Genetics Department, Center for Research and Rehabilitation of Hereditary Ataxias (CIRAH), Holguín, Cuba. taniacmarin@infomed.sld.cu
Tania Cruz
TC
Mariño
Rubén Reynaldo
RR
Armiñán
Humberto Jorge
HJ
Cedeño
José Miguel Laffita
JM
Mesa
Yanetza González
YG
Zaldivar
Raúl Aguilera
RA
Rodríguez
Miguel Velázquez
MV
Santos
Luis Enrique Almaguer
LE
Mederos
Milena Paneque
MP
Herrera
Luis Velázquez
LV
Pérez
D000293:Adolescent; D000328:Adult; D000067528:Ataxins; D003462:Cuba; D004992:Ethics, Medical; D005260:Female; D006580:Genetic Carrier Screening; D005820:Genetic Testing / Q000941:ethics*; D006801:Humans; D009419:Nerve Tissue Proteins / Q000235:genetics; D010375:Pedigree; D011237:Predictive Value of Tests; D011296:Prenatal Diagnosis; D013132:Spinocerebellar Degenerations / Q000175:diagnosis* / Q000235:genetics; D014430:Twins, Monozygotic
D000067528:Ataxins; D009419:Nerve Tissue Proteins
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