The Alpha-1 Association Genetic Counseling Program: An Innovative Approach to Service
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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.
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- The Alpha-1 Association Genetic Counseling Program: An Innovative Approach to Service
Journal of Genetic Counseling
Volume 20, Issue 4 , pp 330-336
- Cover Date
- Print ISSN
- Online ISSN
- Springer US
- Additional Links
- Alpha-1 Antitrypsin deficiency
- Disease-specific genetic counseling
- Non-traditional counseling
- Genetic counselor
- Telephone counseling
- Industry Sectors
- Author Affiliations
- 1. 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
- 2. Alpha-1 Association, Miami, FL, USA