Enns Emily E, Boudreault Patrick, Palmer Christina G S
Department of Biology Genetic Counseling Training Program, California State University-Northridge, Northridge, CA, USA.
J Genet Couns. 2010 Apr;19(2):161-73. doi: 10.1007/s10897-009-9272-6. Epub 2009 Nov 11.
Given the medical and cultural perspectives on deafness it is important to determine if genetic counselors' attitudes toward deaf people can affect counseling sessions for deafness genes. One hundred fifty-eight genetic counselors recruited through the National Society of Genetic Counselors Listserv completed an online survey assessing attitudes toward deaf people and scenario-specific comfort levels discussing and offering genetic testing for deafness. Respondents with deaf/Deaf friends or who work in prenatal or pediatric settings had more positive attitudes toward deaf people than those without deaf/Deaf friends or those working in 'other' settings. More positive attitudes toward deaf people correlated with higher comfort level talking about genetic testing for the two scenarios involving culturally Deaf clients; and correlated with higher comfort level offering genetic testing to culturally Deaf clients wishing to have a deaf child. Attitudes and comfort level were not correlated in the scenarios involving hearing or non-culturally deaf clients. These results suggest that genetic counselors' attitudes could affect information provision and the decision making process of culturally Deaf clients. Cultural sensitivity workshops in genetic counseling training programs that incorporate personal interactions with culturally Deaf individuals are recommended. Additional suggestions for fostering personal interactions are provided.
鉴于关于耳聋的医学和文化观点,确定遗传咨询师对聋人的态度是否会影响耳聋基因咨询会议非常重要。通过美国国家遗传咨询师协会邮件列表招募的158名遗传咨询师完成了一项在线调查,评估对聋人的态度以及在特定场景下讨论和提供耳聋基因检测的舒适度。有聋人朋友或在产前或儿科环境工作的受访者对聋人的态度比没有聋人朋友或在“其他”环境工作的受访者更积极。对聋人更积极的态度与在涉及文化性聋人客户的两种场景中谈论基因检测的更高舒适度相关;并且与向希望生育聋儿的文化性聋人客户提供基因检测的更高舒适度相关。在涉及听力正常或非文化性聋人客户的场景中,态度与舒适度不相关。这些结果表明,遗传咨询师的态度可能会影响文化性聋人客户的信息提供和决策过程。建议在遗传咨询培训项目中开展文化敏感性工作坊,其中纳入与文化性聋人的个人互动。还提供了促进个人互动的其他建议。