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The 130th Annual Meeting of APHA |
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The 130th Annual Meeting of APHA |
Dorothy C. Wertz, PhD, Social Science, Ethics, and Law, University of Massachusetts Medical School, Shriver Division, 200 Trapelo Road, Waltham, MA 02452, 781-642-0292, Dorothy.Wertz@umassmed.edu
Nondirectiveness has long been the ethically preferred approach in reproductive genetic counseling. Patients are expected to make their own decisions, using unbiased information. To ascertain the attitudes of genetics professionals worldwide toward directiveness in counseling after prenatal diagnosis, we used anonymous mail questionnaire surveys with case vignettes in 12 languages, distributed by colleagues in 36 nations with ten or more practicing medical geneticists (n=4629). Questionnaires presented 21 conditions identified after prenatal diagnosis and asked how the respondent would counsel. 2906 geneticists (63%), including 1084 in US (70%) and 499 US nongeneticist physicians (59%) responded. Except in North America, the UK, and Australia, many geneticists reported that they would be both directive and pessimistic for many conditions, especially in Eastern Europe and Asia. In the UK, 10% would counsel in favor of abortion for Trisomy 21; in Northern Europe, 34%; in Southern Europe, 47%; in Eastern Europe, 63%. For cystic fibrosis, percents were 10%, 33%, 43%, and 63% respectively, and for Huntington disease 10%, 21%, 34%, and 48%. Most regarded educational success of a session as more important than empathy or support; many thought their goal was to prevent the birth of children with genetic conditions, by prenatal diagnosis and selective abortion if necessary. Although internationally recognized ethical standards support counseling that is as unbiased as possible, it appears that many geneticists would use other approaches. There is a need for global discussion of optimum counseling approaches.
Learning Objectives:
Keywords: Genetics, Abortion
Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.