Predictive testing for Huntington's disease: a challenge for persons at risk and for professionals

被引：72

作者：

Evers-Kiebooms, G ^{[1
]}

Decruyenaere, M ^{[1
]}

机构：

[1] Univ Hosp Gasthuisberg, Psychosocial Genet Unit, Ctr Human Genet, B-3000 Louvain, Belgium

来源：

PATIENT EDUCATION AND COUNSELING | 1998年 / 35卷 / 01期

关键词：

Huntington's disease; predictive testing; prenatal diagnosis; preimplantation genetic diagnosis; psychological impact; ethics;

D O I：

10.1016/S0738-3991(98)00086-X

中图分类号：

R1 [预防医学、卫生学];

学科分类号：

1004 ; 120402 ;

摘要：

About a decade ago the introduction of predictive testing for Huntington's disease (HD) was an important milestone in medical history. The aim of the present paper concerning predictive DNA-testing for HD is fourfold. First of all it describes the professional challenge of elaborating an adequate test protocol and of permanently using a multidisciplinary approach to deal with predictive test requests. Secondly the paper is aimed at unraveling the factors that play a part in uptake and decision making regarding predictive testing. Hereby the Health Belief Model is used as a framework for understanding differences between tested and untested persons. Thirdly the impact of the test result on psychological well-being is reviewed, Finally this paper assesses the utilisation of prenatal diagnosis after predictive testing for HD and reflects on the psychological and ethical implications of different types of prenatal tests, including preimplantation genetic diagnosis. (C) 1998 Elsevier Science Ireland Ltd. All rights reserved.

引用

页码：15 / 26

页数：12

共 48 条

[1]

*AD HOC COMM GEN C, 1975, AM J HUM GENET, V27, P240

[2] 5-YEAR STUDY OF PRENATAL TESTING FOR HUNTINGTONS-DISEASE - DEMAND, ATTITUDES, AND PSYCHOLOGICAL-ASSESSMENT [J].

ADAM, S ;

WIGGINS, S ;

WHYTE, P ;

BLOCH, M ;

SHOKEIR, MHK ;

SOLTAN, H ;

MESCHINO, W ;

SUMMERS, A ;

SUCHOWERSKY, O ;

WELCH, JP ;

HUGGINS, M ;

THEILMANN, J ;

HAYDEN, MR .

JOURNAL OF MEDICAL GENETICS, 1993, 30 (07) :549-556

[3]

BENJAMIN CM, 1994, AM J HUM GENET, V55, P606

[4] Huntington's disease predictive resting: The case for an assessment approach to requests from adolescents [J].

Binedell, J ;

Soldan, JR ;

Scourfield, J ;

Harper, PS .

JOURNAL OF MEDICAL GENETICS, 1996, 33 (11) :912-918

[5] PREDICTIVE TESTING FOR HUNTINGTON DISEASE .2. DEMOGRAPHIC CHARACTERISTICS, LIFE-STYLE PATTERNS, ATTITUDES, AND PSYCHOSOCIAL ASSESSMENTS OF THE 1ST 51 TEST CANDIDATES [J].

BLOCH, M ;

FAHY, M ;

FOX, S ;

HAYDEN, MR .

AMERICAN JOURNAL OF MEDICAL GENETICS, 1989, 32 (02) :217-224

[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]

BROHOLM J, 1994, NEUROLOGY, V44, P1533

[8] Few psychological consequences of presymptomatic testing for Huntington disease [J].

Bundey, S .

LANCET, 1997, 349 (9044) :4-4

[9] DEFENSIVE PESSIMISM AND STRESS AND COPING [J].

CANTOR, N ;

NOREM, JK .

SOCIAL COGNITION, 1989, 7 (02) :92-112

[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

← 1 2 3 4 5 →