Quaid K A, Brandt J, Faden R R, Folstein S E
Johns Hopkins University, Baltimore, Maryland.
Clin Genet. 1989 Dec;36(6):431-8.
In September 1986, the Baltimore Huntington's Disease Project initiated a voluntary program of presymptomatic genetic testing for Huntington's Disease (HD). Forty-seven persons at 50% risk for HD attended one of two educational sessions designed to educate them about the test. At the beginning and end of each session, subjects completed the Affect Adjective Checklist and a set of questions assessing knowledge about and attitude toward presymptomatic testing. As a result of attending an educational session, subjects learned more about presymptomatic testing, and their attitude towards finding out whether they had the marker for the HD gene became more favorable. Fewer people requested genetic testing than expected. Those who later chose to undergo genetic testing had a more favorable attitude at both the beginning and at the end of the educational session. The significance of these data for genetic counselors is discussed.
1986年9月,巴尔的摩亨廷顿舞蹈症项目启动了一项针对亨廷顿舞蹈症(HD)的自愿性症状前基因检测计划。47名有50%患HD风险的人参加了两场旨在让他们了解该检测的教育课程中的一场。在每场课程开始和结束时,受试者完成了情感形容词检查表以及一组评估其对症状前检测的知识和态度的问题。参加教育课程后,受试者对症状前检测有了更多了解,他们对于知晓自己是否携带HD基因标记的态度也变得更加积极。要求进行基因检测的人数比预期少。那些后来选择接受基因检测的人在教育课程开始和结束时态度都更为积极。本文讨论了这些数据对遗传咨询师的意义。