Huntington's disease predictive resting: The case for an assessment approach to requests from adolescents

被引:25
作者
Binedell, J [1 ]
Soldan, JR [1 ]
Scourfield, J [1 ]
Harper, PS [1 ]
机构
[1] UNIV WALES COLL MED, DEPT PSYCHOL MED, CARDIFF CF4 4XN, S GLAM, WALES
关键词
adolescence; Huntington's disease; predictive genetic resting;
D O I
10.1136/jmg.33.11.912
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
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 miners, current policy and guidelines, based on the ethical principles of non-maleficence and respect for individual autonomy and confidentiality, generally exclude the testing of miners. 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 UR 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.
引用
收藏
页码:912 / 918
页数:7
相关论文
共 48 条
[1]  
ADAM S, 1995, AM J HUM GENET, V57, P1698
[2]   IN THE GENES OR IN THE STARS - CHILDRENS COMPETENCE TO CONSENT [J].
ALDERSON, P .
JOURNAL OF MEDICAL ETHICS, 1992, 18 (03) :119-124
[3]  
[Anonymous], 1993, J Med Genet, V30, P1028
[4]  
[Anonymous], RISK TAKING BEHAV
[5]   PRESYMPTOMATIC TESTING FOR LATE-ONSET GENETIC-DISORDERS - LESSONS FROM HUNTINGTONS-DISEASE [J].
BALL, DM ;
HARPER, PS .
FASEB JOURNAL, 1992, 6 (10) :2818-2819
[6]   PREDICTIVE TESTING FOR HUNTINGTON DISEASE IN CANADA - THE EXPERIENCE OF THOSE RECEIVING AN INCREASED RISK [J].
BLOCH, M ;
ADAM, S ;
WIGGINS, S ;
HUGGINS, M ;
HAYDEN, MR .
AMERICAN JOURNAL OF MEDICAL GENETICS, 1992, 42 (04) :499-507
[7]  
BLOCH M, 1990, AM J HUM GENET, V46, P1
[8]   THE GENETIC TESTING OF CHILDREN [J].
CLARKE, A .
JOURNAL OF MEDICAL GENETICS, 1994, 31 (10) :785-797
[9]  
Clarke A., 1996, TROUBLED HELIX SOCIA, P164
[10]   SELF-SELECTION IN PREDICTIVE TESTING FOR HUNTINGTONS-DISEASE [J].
CODORI, AM ;
HANSON, R ;
BRANDT, J .
AMERICAN JOURNAL OF MEDICAL GENETICS, 1994, 54 (03) :167-173