Using the Best Interests Standard to Decide Whether to Test Children for Untreatable, Late-Onset Genetic Diseases.

A new analysis of the Best Interests Standard is given and applied to the controversy about testing children for untreatable, severe late-onset genetic diseases, such as Huntington's disease or Alzheimer's disease. A professional consensus recommends against such predictive testing, because it is no...

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Publicado en:Journal of Medicine & Philosophy Vol. 32; no. 4; pp. 375 - 395
Autor principal: Kopelman, Loretta M.
Formato: Artículo
Publicado: Oxford University Press / USA Jul/Aug2007
Materias:
Acceso en línea:Ver este registro en EBSCOhost
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        atl: Using the Best Interests Standard to Decide Whether to Test Children for Untreatable, Late-Onset Genetic Diseases.
      aug:
        au: Kopelman, Loretta M.
        affil: Brody School of Medicine, East Carolina University, Greenville, North Carolina
      su:
        Medical ethics
        Decision making in pediatrics
        Human chromosome abnormality diagnosis
        Alzheimer's disease
        Huntington disease
        Informed consent (Medical law)
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          Medical ethics
          Decision making in pediatrics
          Human chromosome abnormality diagnosis
          Alzheimer's disease
          Huntington disease
          Informed consent (Medical law)
      keyword:
        best interest
        children
        ethics
        genetics
        Huntington's disease
        law
        pediatrics
        rights
      ab: A new analysis of the Best Interests Standard is given and applied to the controversy about testing children for untreatable, severe late-onset genetic diseases, such as Huntington's disease or Alzheimer's disease. A professional consensus recommends against such predictive testing, because it is not in children's best interest. Critics disagree. The Best Interests Standard can be a powerful way to resolve such disputes. This paper begins by analyzing its meaning into three necessary and jointly sufficient conditions showing it: 1. is an "umbrella" standard, used differently in different contexts, 2. has objective and subjective features, 3. is more than people's intuitions about how to rank potential benefits and risks in deciding for others but also includes evidence, established rights, duties and thresholds of acceptable care, and 4. can have different professional, medical, moral and legal uses, as in this dispute. Using this standard, support is given for the professional consensus based on concerns about discrimination, analogies to adult choices, consistency with clinical judgments for adults, and desires to preserve of an open future for children. Support is also given for parents' legal authority to decide what genetic tests to do.
      pubtype: Academic Journal
      doctype: Article
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    language: English
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