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失智症之遺傳檢驗暨諮詢倫理議題

The Ethical Issues of Genetic Testing and Counseling for Dementia

摘要


隨著老年人口攀升,失智症患者的治療、照護及預防議題已日益重要。醫師為病患施行失智症遺傳檢驗時,應提供良好的遺傳諮詢,以期提升病人及家屬之權益。本文以阿茲海默症為例,探討失智症診斷及告知、失智症遺傳檢驗之類型及其遺傳諮詢常見之倫理議題,包括:尊重自主、受檢者決定能力及最佳利益之評估、檢驗風險及利益評估、隱私與保密等。並根據我國倫理法律社會現況,試擬執業倫理準則,期能有助於我國臨床上失智症之遺傳檢驗暨諮詢之執行。

並列摘要


The increased elderly population has made the treatment, care and prevention of dementia patients more and more important in modern society. While doctors provide dementia genetic testing to patients, appropriate genetic counseling is necessary to protect the benefit and rights of patients and their family members. This paper uses Alzheimer's disease (AD) as an example to explore the diagnosis, disclosure of results, hereditary and risk factors of dementia, types of genetic testing for dementia, and the ethical issues arising from the genetic counselling, which include respect for autonomy, the evaluation of decision-making capacity and best interests of patients, risk-benefit assessment of the testing, and privacy and confidentiality. Moreover, based on the ethical, legal, and social circumstances in Taiwan, the guidelines for genetic testing and counseling for dementia were proposed. We hope such guidelines will be helpful for the clinical practice of genetic testing and counseling of dementia.

參考文獻


蔡甫昌、楊尚儒、張至寧、胡務亮、楊智超:遺傳檢測倫理議題及遺傳諮詢倫理準則。台灣醫學2010; 11:658-71。[Tsai FC, Yang SJ, Chang CN, Hwu WL, Yang CC: Ethical issues in genetic testing and the ethical guidelines for genetic counselling. Formosan J Med 2010;11:658-71. doi: 10.6320/FJM.2010.14(6).09"
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Steinbart EJ, Smith CO, Poorkaj P, et al: Impact of DNA testing for early-onset familial Alzheimer disease and frontotemporal dementia. Arch Neurol 2001;58:1828-31. doi: 10.1001/archneur.58.11.1828"
Maguire CP, Kirby M, Coen R, et al: Family members' attitudes toward telling the patient with Alzheimer's disease their diagnosis. BMJ 1996;313:529-30. doi: 10.1136/bmj.313.7056.529"

被引用紀錄


陳雨薇(2011)。偽副甲狀腺低下症Ib型的基因檢測與遺傳諮詢〔碩士論文,國立臺灣大學〕。華藝線上圖書館。https://doi.org/10.6342/NTU.2011.01931
王瑤華(2017)。遺傳疾病對護理的衝擊及挑戰護理雜誌64(5),24-29。https://doi.org/10.6224/JN.000065

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