Abstract
The Genetic Alliance represents more than 280 consumer and professional organizations and three million individuals, working together to enhance the lives of everyone affected by genetic conditions. As a central resource nexus, the Alliance provides an information hotline, technical assistance to support groups, public policy consultation and public and healthcare professional education. The Information Resource Center Helpline, staffed by a genetic counselor and full-time intern, has been at the core of the Alliance mission since 1986. Callers are linked to relevant, up-to-date information, referrals and resources about all things genetic through a number of different venues. Over the 12 month period (11/1/98 to 11/1/99), we answered 1435 phone calls, 619 emails, and 79 letters. During that same time, our website received 435,857 hits. The majority of callers (46%) seek information about specific genetic conditions (both common and rare). This is followed by individuals interested in support group referrals (19%) and Alliance information (11%). Most of the callers are either affected individuals (15%) or family members (38%). Others are health professionals (13%) and students (7%). Many of these individuals learn about the Alliance through our website (13%). This is especially true for those who use the e-mail Helpline to access information and resources. Other users contact the Helpline through referrals in published directories (12%) and the genetics/healthcare community (9%). When a call comes into the Helpline, the phone is answered promptly, concerns are validated, requests are assessed, and a comprehensive search is done for answers. Calls on the Helpline range in duration from less than one minute to over 20 minutes, with the average call taking about 6 minutes to complete. Helpline services center around referrals to established and credible consumer and professional resources, in particular support and research organizations and genetic specialists. We plan to expand collaborative efforts with the professional community to better serve the people who rely on our unique services.
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Lander, L., Kramer, E., Davidson, M. et al. The public's quest for genetic information: The role of a telephone helpline. Genet Med 2, 97 (2000). https://doi.org/10.1097/00125817-200001000-00168
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DOI: https://doi.org/10.1097/00125817-200001000-00168