Professional Issues

Journal of Genetic Counseling

, Volume 20, Issue 4, pp 330-336

First online:

The Alpha-1 Association Genetic Counseling Program: An Innovative Approach to Service

  • Dawn McGeeAffiliated withDivision of Pulmonary and Critical Care Medicine, Department of Medicine, Medical University of South Carolina Email author 
  • , Charlie StrangeAffiliated withDivision of Pulmonary and Critical Care Medicine, Department of Medicine, Medical University of South Carolina
  • , Rebecca McClureAffiliated withDivision of Pulmonary and Critical Care Medicine, Department of Medicine, Medical University of South Carolina
  • , Laura SchwarzAffiliated withDivision of Pulmonary and Critical Care Medicine, Department of Medicine, Medical University of South Carolina
  • , Marlene ErvenAffiliated withAlpha-1 Association

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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.

Keywords

Alpha-1 Antitrypsin deficiency Disease-specific genetic counseling Non-traditional counseling Genetic counselor Telephone counseling