The Alpha-1 Association Genetic Counseling Program... [J Genet Couns. 2011] - PubMed result

J Genet Couns. 2011 Mar 19. [Epub ahead of print]

The Alpha-1 Association Genetic Counseling Program: An Innovative Approach to Service.
McGee D, Strange C, McClure R, Schwarz L, Erven M.

Division of Pulmonary and Critical Care Medicine, Department of Medicine, Medical University of South Carolina, 96 Jonathan Lucas Street, 812 CSB, MSC 630, Charleston, SC, 29425-6300, USA, mcgeeda@musc.edu.

Abstract
In an era of specialty medicine, genetic counselors are becoming increasingly focused in their service provision. The Alpha-1 Association Genetic Counseling Program, established in September 2007, specializes in confidential toll-free genetic counseling provided by a certified genetic counselor for Alpha-1 Antitrypsin deficiency, a co-dominant condition associated with lung and/or liver disease. The program received more than 600 callers in its first 2 years. Sixty-seven percent of new callers were family members, carriers, or health professionals. The number of callers increased between the first 2 years, with the greatest increases being family members and health professionals. Testing options and explanation of results encompassed 60% of initial reasons for calls. Seventy-two percent of referrals came from family and friends, test result letters, and the Alpha-1 Association. Between year 1 and 2 family member referrals showed the largest increase. This disease-specific genetic counseling program provides a model that may be useful for other rare disease communities.

PMID: 21424325 [PubMed - as supplied by publisher]

The Alpha-1 Association Genetic Counseling Program... [J Genet Couns. 2011] - PubMed result