Purpose: The goal of this 3-year pilot project was to increase accessibility to genetics educational and clinical services in Maine. Methods: Southern Maine Genetics Services, Foundation for Blood Research in collaboration with Maine Telemedicine Services established telemedicine capacity to link with rural health care centers located in Northern, Central, and Southern Maine and public health nursing statewide for the provision of genetics clinical and educational services. Core partners included a rural family practice residency program, a rural pediatric practice in northern Maine, and public health nurses statewide. The telegenetics model created was based on development and implementation of a preventive and medical management technology solution, conducting a pilot study to collect data, and approaching insurance companies for reimbursement. Evaluation included surveys on the quality, acceptability, and usefulness of genetics services delivered via telemedicine, telephone interviews, and decision-making confidence evaluations. Results: During the project period, 24 rural clinical sites participated. In total, 93 presentations were given, and 125 patients were evaluated. Sixty-four percent of patients evaluated were pediatric. Despite site coordinator efforts to complete satisfaction surveys, the provider and patient response level was low (18% and 25%, respectively). Of those evaluations received, provider and patient response to telegenetics was positive. Decision-making confidence for genetics and neurology consultants was high. Our experience contributes to the development of telegenetics models that can be used in other rural states. Genet Med 2005: 7(1):21-27.
Psychosocial Genetic Counseling by Jon Weil was written to fill a niche in the literature. It is one of the only books to deal with the counseling aspects of genetic counseling; it does so with more depth and breadth than any other book currently available. Its target audience is genetic counseling students and practicing genetic counselors. Other health providers who find themselves needing to know more about genetic counseling such as medical geneticists, nurses, social workers, psychologists, and so on would also benefit from reading this text. Practical advice is combined with theory primarily through the use of vignettes and sample dialog. This is a highly effective presentation and is one of the major strengths of the book. The fact that it is very specific will make it very valuable to the target audience, but may decrease its wider appeal. For genetic counselors it is uniquely useful-there are many books on counseling in general, but very few that provide what this book provides.The author, Jon Weil, is especially well qualified to write such a book. The director of the Berkeley Genetic Counseling Program (University of California, Berkeley) for many years, he has a PhD in both Social-Clinical Psychology and Genetics. In his private psychotherapy practice, he has a special interest in genetic diseases and birth defects. His years of experience are reflected in the practical and elegantly worded guidance that he provides throughout the text. One reader commented, "I particularly liked those scenarios that contrasted some of the more common mistakes and less effective responses with more effective alternatives."Since genetic counseling students will comprise a main audience for this book, a group of 11 from the Brandeis Genetic Counseling Program (10 students, 1 faculty member) set out to create this review. Each read and commented on a chapter/section in which she had a particular interest or expertise. Then one of us (KSK) compiled this summary.The book is intended to be read at three levels and that is one of its strengths. On the first level, the book exposes the counselor to many of the most common counseling situations faced in genetic counseling: counseling individuals as part of a family, counseling couples, working with children, working with individuals of various cultural backgrounds to name a few. It lays out the major issues and counseling strategies for each of these areas. Upon closer reading, the counselor can
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