Black R B, Weiss J O
Columbia University School of Social Work, New York, NY 10025.
Am J Med Genet. 1988 Jan;29(1):21-33. doi: 10.1002/ajmg.1320290104.
Voluntary, lay genetic support groups have become important providers of supportive, educational, and social services for clients and families who face genetic disorders. A survey of 88 persons representing genetic support groups confirms that these organizations are providing their members with information and assistance about not only the genetic aspects of the disorders but also problems of daily living. Respondents noted that professionals frequently refer patients to their groups and that many of the groups have professionals working directly with them as guest lecturers, consultants, and advisory board members. At least 20% cited a lack of genetic counseling services for members of their groups as a serious problem and called for greater sensitivity to emotional concerns in the timing and delivery of genetic counseling by professionals. Respondents called for greater collaboration between the voluntary organizations and professionals but underscored the unique benefits of empathy and support from one's peers.
志愿性的、非专业的基因支持团体已成为为面临基因疾病的客户和家庭提供支持、教育及社会服务的重要力量。一项对代表基因支持团体的88人的调查证实，这些组织不仅在为其成员提供有关疾病基因方面的信息和帮助，还提供日常生活问题方面的信息和帮助。受访者指出，专业人员经常将患者转介到他们的团体，而且许多团体有专业人员以客座讲师、顾问和咨询委员会成员的身份直接与他们合作。至少20%的受访者指出，他们团体的成员缺乏基因咨询服务是一个严重问题，并呼吁专业人员在提供基因咨询的时间和方式上，要更加关注情感问题。受访者呼吁志愿组织和专业人员之间加强合作，但也强调了来自同龄人同情和支持的独特益处。
