Literature DB >> 8950670

Huntington's disease predictive testing: the case for an assessment approach to requests from adolescents.

J Binedell1, J R Soldan, J Scourfield, P S Harper.   

Abstract

Adolescents who are actively requesting Huntington's predictive testing of their own accord pose a dilemma to those providing testing. In the absence of empirical evidence as regards the impact of genetic testing on minors, current policy and guidelines, based on the ethical principles of non-maleficence and respect for individual autonomy and confidentiality, generally exclude the testing of minors. It is argued that adherence to an age based exclusion criterion in Huntington's disease predictive testing protocols is out of step with trends in UK case law concerning minors' consent to medical treatment. Furthermore, contributions from developmental psychology and research into adolescents' decision making competence suggest that adolescents can make informed choices about their health and personal lives. Criteria for developing an assessment approach to such requests are put forward and the implications of a case by case evaluation of competence to consent in terms of clinicians' tolerance for uncertainty are discussed.

Entities:  

Keywords:  Genetics and Reproduction; Professional Patient Relationship

Mesh:

Year:  1996        PMID: 8950670      PMCID: PMC1050784          DOI: 10.1136/jmg.33.11.912

Source DB:  PubMed          Journal:  J Med Genet        ISSN: 0022-2593            Impact factor:   6.318


  29 in total

1.  Adolescents' capacities to provide voluntary informed consent: the effects of parental influence and medical dilemmas.

Authors:  David G Scherer; N Dickon Reppuci
Journal:  Law Hum Behav       Date:  1988-06

Review 2.  Adolescent decision-making: the development of competence.

Authors:  L Mann; R Harmoni; C Power
Journal:  J Adolesc       Date:  1989-09

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Authors:  A Tyler; M Morris
Journal:  J Med Ethics       Date:  1990-03       Impact factor: 2.903

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Authors:  J Green; A Stewart
Journal:  J Med Ethics       Date:  1987-03       Impact factor: 2.903

5.  A polymorphic DNA marker genetically linked to Huntington's disease.

Authors:  J F Gusella; N S Wexler; P M Conneally; S L Naylor; M A Anderson; R E Tanzi; P C Watkins; K Ottina; M R Wallace; A Y Sakaguchi
Journal:  Nature       Date:  1983 Nov 17-23       Impact factor: 49.962

6.  Genetic counseling--the postcounseling period: I. Parents' perceptions of uncertainty.

Authors:  A Lippman-Hand; F C Fraser
Journal:  Am J Med Genet       Date:  1979

7.  Ethical issues policy statement on Huntington's disease molecular genetics predictive test. International Huntington Association. World Federation of Neurology.

Authors:  L Went
Journal:  J Med Genet       Date:  1990-01       Impact factor: 6.318

8.  Opinion: predictive testing for Huntington disease in childhood: challenges and implications.

Authors:  M Bloch; M R Hayden
Journal:  Am J Hum Genet       Date:  1990-01       Impact factor: 11.025

9.  Predictive testing for Huntington disease: I. Description of a pilot project in British Columbia.

Authors:  S Fox; M Bloch; M Fahy; M R Hayden
Journal:  Am J Med Genet       Date:  1989-02

10.  The motivation of at-risk individuals and their partners in deciding for or against predictive testing for Huntington's disease.

Authors:  G Evers-Kiebooms; A Swerts; J J Cassiman; H Van den Berghe
Journal:  Clin Genet       Date:  1989-01       Impact factor: 4.438

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  5 in total

1.  Response to requests for genetic testing is not based on age alone.

Authors:  P S Harper; R Glew; R Harper
Journal:  BMJ       Date:  1999-08-28

Review 2.  Inappropriate genetic testing of children.

Authors:  A Fryer
Journal:  Arch Dis Child       Date:  2000-10       Impact factor: 3.791

3.  The genetic testing of children.

Authors:  A Fryer
Journal:  J R Soc Med       Date:  1997-08       Impact factor: 5.344

4.  Experiences of teens living in the shadow of Huntington Disease.

Authors:  Kathleen J H Sparbel; Martha Driessnack; Janet K Williams; Debra L Schutte; Toni Tripp-Reimer; Meghan McGonigal-Kenney; Lori Jarmon; Jane S Paulsen
Journal:  J Genet Couns       Date:  2008-03-18       Impact factor: 2.537

5.  "Family matters": a conceptual framework for genetic testing in children.

Authors:  Allyn McConkie-Rosell; Gail A Spiridigliozzi
Journal:  J Genet Couns       Date:  2004-02       Impact factor: 2.537

  5 in total

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