遺傳服務提供者與利用者對現階段尚無法治療之疾病遺傳檢測態度之差異

Health Care Provider and Consumer Attitudes Toward Genetic Testing for Non-treatable Genetic Diseases

胡淑貞(Susan C. Hu) ； 莊茹潔(Ru-Jye Chuang) ； 王瑤華(Yao-Hua Wang) ； 黃怡瑾(I-Ching Huang) ； 林秀娟(Shio-Jen Lin)

《醫護科技學刊》 7卷3期 (2005/07) Pp. 246-257

https://doi.org/10.6563/TJHS.2005.7(3).3

摘要

目的：本研究旨在探討遺傳服務提供者與使用者對遺傳檢測態度之差異，以協助設計適切的遺傳與倫理教育課程。
方法：對象包括三種：1)412位醫產兒科醫護人員，2)569位新婚夫婦，及3)304位孕產婦及其配偶。本研究採情境式問卷設計，以面訪方式完成資料收集。
結果：分為兩部分：l)對未成年子女參與遺傳檢測之態度：超過85%的醫護人員及新婚夫婦認為可以替未成年子女進行遺傳檢測，但僅有35.5%孕產婦表示會直接要求醫師執行遣傳檢測。雖然大部分的新婚夫婦及孕產婦會與配偶一起做決定，但仍有一部分人希望醫師幫他們做決定。2)對胎兒進行遺傳檢測之看法：三組對象皆有近80%表示認同若懷孕中的胎兒有可能遺傳到異常的染色體時，應為胎兒執行遺傳檢測。主要原因在醫護人員是「為了避免遺傳，所以就做檢測」；在新婚夫婦則是「想生基因正常的孩子」。
結論：瞭解不同對象對遺傳檢測的看法可協助未來在遺傳檢測決策過程中服務提供者和使用者間互相瞭解，並能得到足夠訊息。

關鍵字

遺傳檢測 ； 態度 ； 醫療人員 ； 新婚夫婦 ； 孕產婦

並列摘要

Objectives: To compare the attitudes of genetic testing between health care providers and consumers to provide information critical to designing genetic education programs for different populations.
Methods: Study subjects comprised 412 medical professionals, 569 newlyweds, and 304 pregnant women in Tainan, Taiwan. The questionnaire was developed using case scenarios and data was collected by face-to-face interviews.
Results: Analytical results were divided into two principal categories:
1) Attitudes toward genetic testing for children under 18 years old
We first hypothesized a situation: ”if one parent carries a genetic disorder (or will likely become ill in the future), will you submit your children to genetic testing?” Analytical results indicated that ＞ 85% of medical professionals and newly married couples would have their children tested. However, only 35.5% of pregnant women favored submitting their child to genetic testing; these future mothers considered their family's opinions more seriously than newly married couples did. Most newly married couples and pregnant women preferred discussing this issue with their spouses. However, a small number of respondents preferred that doctors make the final decision.
2) Attitudes toward prenatal genetic testing
Questionnaire results demonstrated that the 3 groups had the same opinion toward prenatal genetic testing, that is, more than 80% agreed to prenatal genetic testing if was likely to have a genetic disorder. The principal reason cited by newly married couples and pregnant women who agreed with prenatal genetic testing was ”having children with normal genes”, whereas medical professionals favored prenatal genetic testing to ”avoid genetic disorders”.
Conclusion: Differences among three study groups with respect to genetic testing may be due to their differing roles and viewpoints of these issues. Elucidating these differences would improve communication between health care providers and consumers.

並列關鍵字

Genetic testing ； attitudes ； medical professionals ； newly married couples ； pregnant women

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