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.
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Disclosure of interest
Dawn McGee and Dr. Charlie Strange receive salary support through a research grant funded by the Alpha-1 Association, a non-profit patient support organization. Marlene Erven is an employee of the Alpha-1 Association. All authors have full control of all primary data and agree to allow the journal to review data if requested.
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McGee, D., Strange, C., McClure, R. et al. The Alpha-1 Association Genetic Counseling Program: An Innovative Approach to Service. J Genet Counsel 20, 330–336 (2011). https://doi.org/10.1007/s10897-011-9355-z
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DOI: https://doi.org/10.1007/s10897-011-9355-z