ABSTRACT
PURPOSE: To assess attitudes towards predictive testing for autosomal dominant retinitis pigmentosa (ADRP). METHODS: A prospective questionnaire study of 46 affected adults and their adult family members identified from pedigrees clearly consistent with ADRP or who had had DNA-testing confirmation of ADRP before the study commenced. RESULTS: High proportions of unaffected siblings (73%) and patients (67%) agreed to prenatal testing. Patients agreed to prenatal testing. Patients agreed significantly more often than unaffected siblings that treatment should be available prior to initiating predictive testing. Psychoemotional distress was reported in 57% of the affected adults and their family members in recollecting their own predictive testing as children. CONCLUSIONS: ADRP families indicate a favorable attitude towards testing presymptomatic children with counseling to lessen the psychological and social impact of results.
Subject(s)
Attitude to Health , Genetic Predisposition to Disease/psychology , Genetic Testing/psychology , Retinitis Pigmentosa/genetics , Adult , Family , Female , Genes, Dominant , Genetic Predisposition to Disease/genetics , Humans , Male , Prospective Studies , Surveys and QuestionnairesABSTRACT
Catholic teaching has no moral difficulties with research on stem cells derived from adult stem cells or fetal cord blood. The ethical problem comes with embryonic stem cells since their genesis involves the destruction of a human embryo. However, there seems to be significant promise of health benefits from such research. Although Catholic teaching does not permit any destruction of human embryos, the question remains whether researchers in a Catholic institution, or any researchers opposed to destruction of human embryos, could participate in research on cultured embryonic stem cells, or whether a Catholic institution could use any therapy that ultimately results from such research. This position paper examines how such research could be conducted legitimately in a Catholic institution by using an ethical analysis involving a narrative context, the nature of the moral act, and the principle of material cooperation, along with references to significant ethical assessments. It also offers tentative guidelines that could be used by a Catholic institution in implementing such research.
Subject(s)
Catholicism , Embryo Research/ethics , Hospitals, Religious , Stem Cells , Aborted Fetus/cytology , Beginning of Human Life/ethics , Complicity , Embryo, Mammalian/cytology , Guidelines as Topic , Hospitals, Religious/ethics , Humans , Stem Cell Transplantation , Theology , VaccinesABSTRACT
Los abusos en investigación en niños, los errores, las normas, la inversión mínima y conceptos equivocados por personal profesional contribuyen a que los niños sean huérfanos terapéuticos. Es urgente el imperativo moral de ampliar la farmacología pediátrica, pero tal empresa conlleva riesgos. Los pediatras, por ser expertos en la atención de niños, tienen la situación privilegiada de poder recomendar la ampliación de esta investigación de utilidad invaluable y al mismo tiempo ser abogados y protectores de los niños que participan. Un compromiso mutuo asegurará que en lo futuro habrá mejores medios y situaciones para contar con medicamentos inocuos y eficaces, y con ello brindar una atención mucho mejor a los niños