遺傳疾病對護理的衝擊及挑戰

Impact and Challenges of Genetic Disorders on Nursing

遺傳疾病對個人生活型態及家庭都可能產生巨大影響，提供接受遺傳檢測之個案，護理人員應於檢驗前後給予諮詢與衛教。目前對於接受遺傳檢測的態度趨向提高婦女或夫婦的自主性，提供充分資訊，讓他們自行決定可以接受的檢驗，並及早準備迎接有特殊照護需求的新生兒。另外，對於已被檢測為失智症高危險群之民眾應給予合適諮詢，以協助其瞭解結果代表的意義及心理支持。而目前政府對於遺傳檢驗機構之管理，遺傳疾病患者治療費用之保險或補助，以及倘若因檢測產生醫療糾紛，政府如何給予受檢者及檢驗機構公平審理等，皆未有清楚之標準。民眾對於引起遺傳疾病的因素所知有限，對於相關診斷、治療也存在許多不確定性，這雖是醫療照護者的限制，但對於民眾來說則風險更大，護理人員應儘早發現此項趨勢及護理需求，訂定合適方針以因應遺傳疾病帶給民眾的衝擊及挑戰。

Genetic disorders greatly impact human life. Nursing staffs should provide counseling and health education before and after patients receive genetic testing. Current attitudes toward women who receive genetic tests emphasize respect patient autonomy and allowing the patient to make her own decisions regarding the tests she wants to take and her reproductive planning. For patients whose results include them in the high-risk group for dementia, providing mental support and counseling to assist them to understand the meaning of these results is important. One issue that deserves particular attention is the supervision of genetic testing agencies. Although the credibility, testing fees, and professionalism of these agencies must be verified, no government agency currently has executive authority in this area. Because genetic disorders often require huge expenditures to help patients live with dementia, health insurance is necessary. As Taiwan currently offers universal healthcare under the National Health Insurance program, dementia is currently and will continue to be an immense challenge to both the government and the nursing profession. Currently, medical knowledge related to genetic diseases and the ability of health professionals to provide effective treatments are still very limited. The nursing profession should be aware of the trends and challenges related to genetic disorders and devise appropriate policies in order to response the challenges.