Using the best interests standard to decide whether to test children for untreatable, late-onset genetic diseases
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Journal of Medicine and Philosophy 32 (4):375 – 394 (2007)
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: is an "umbrella" standard, used differently in different contexts, has objective and subjective features, 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 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.
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
M. J. Cherry (2010). Parental Authority and Pediatric Bioethical Decision Making. Journal of Medicine and Philosophy 35 (5):553-572.
Similar books and articles
Michael S. Merry (2007). The Well-Being of Children, the Limits of Paternalism, and the State: Can Disparate Interests Be Reconciled? Ethics and Education 2 (1):39-59.
Paula Boddington & Susan Hogben (2006). Working Up Policy: The Use of Specific Disease Exemplars in Formulating General Principles Governing Childhood Genetic Testing. [REVIEW] Health Care Analysis 14 (1):1-13.
Barabara Biesecker (1998). Future Directions in Genetic Counseling: Practical and Ethical Considerations. Kennedy Institute of Ethics Journal 8 (2):145-160.
Jessica Hammond (2010). Genetic Engineering to Avoid Genetic Neglect: From Chance to Responsibility. Bioethics 24 (4):160-169.
Rebecca Bennett (2001). Antenatal Genetic Testing and the Right to Remain in Ignorance. Theoretical Medicine and Bioethics 22 (5):461-471.
Mary Ann Sevick, Donna G. Nativio & Terrance Mcconnell (2005). Genetic Testing of Children for Late Onset Disease. Cambridge Quarterly of Healthcare Ethics 14 (1):47-56.
P. J. Malpas (2008). Predictive Genetic Testing of Children for Adult-Onset Diseases and Psychological Harm. Journal of Medical Ethics 34 (4):275-278.
Loretta M. Kopelman & Arthur E. Kopelman (2007). Using a New Analysis of the Best Interests Standard to Address Cultural Disputes: Whose Data, Which Values? Theoretical Medicine and Bioethics 28 (5):373-391.
Cynthia B. Cohen (1998). Wrestling with the Future: Should We Test Children for Adult-Onset Genetic Conditions? Kennedy Institute of Ethics Journal 8 (2):111-130.
Lainie Friedman Ross (2002). Predictive Genetic Testing for Conditions That Present in Childhood. Kennedy Institute of Ethics Journal 12 (3):225-244.
Added to index2009-01-28
Total downloads19 ( #94,117 of 1,101,834 )
Recent downloads (6 months)3 ( #128,836 of 1,101,834 )
How can I increase my downloads?