Predictive testing for Huntington's disease: a challenge for persons at risk and for professionals |
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| Institution: | 1. Department of Neurology, Ruijin Hospital affiliated with the School of Medicine, Shanghai Jiao Tong University, 197 Ruijin No.2 Road, Shanghai 200025, China;2. Department of Neurology, Shanghai Ninth People''s Hospital, Shanghai JiaoTong University School of Medicine, Discipline Construction Research Center of China Hospital Development Institute, Shanghai Jiao Tong University, 280 Mohe Road, Shanghai 201999, China;3. Department of Psychiatry, Tongji Hospital, Tongji University School of Medicine, 389 Xin Cun Road, Shanghai 200065, China;4. Shanghai Mental Health Central, Shanghai Jiao Tong University School of Medicine, 600 Wanping Nan Road, Shanghai 200013, China;5. Department of Learning, Informatics, Management and Ethics, Karolinska Institute, Stockholm 17177, Sweden;6. School of Public Health, Shanghai Jiao Tong University, 227 Chong Qing Nan Road, Shanghai 200025, China |
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| Abstract: | 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. |
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