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[ Recorded presentation ] Recorded presentation

Website expansion for the Tennessee genetics and newborn screening program

David Hollar, PhD, Teresa Blake, MS, Beth Wilson, MS, MPH, and Carmen Lozzio, MD. Department of Medical Genetics, University of Tennesee Graduate School of Medicine, Suite 435, 1930 Alcoa Highway, Knoxville, TN 37920, (865) 544-9030, dhollar@mc.utmck.edu

Consumer and healthcare providers (HPC) are increasingly using the Internet for easily accessible information. Two central goals of the Tennessee Genetics Plan are to increase consumer and HPC understanding of genetic conditions and empower consumers to be effective advocates for their child with special health care needs. We present the development of the Tennessee Genetics and Newborn Screening (TNGNBS) website and initial consumer feedback on this website. A total of 40 state genetics websites were evaluated for the 50 states and Washington D.C from September 2003 to October 2003. Qualitative evaluation of the 40 websites was divided between two evaluators and focused on the quality and quantity of content, ease of access, and additional resource links. The TNGNBS website was developed and reviewed by the Consumer Involvement Subcommittee and the Professional Education Subcommittee of the Tennessee Statewide Genetics Coordinating Committee (SGCC). Only 9 of the 40 (22.5%) websites provided ample, quality information with ease of navigation. Five of the 40 (12.5%) websites provided additional resource links for consumers and/or HCP. The TNGNBS website was developed with general information on the program, state clinical genetics services, a consumer/parent oriented section with condition specific resource links, a HCP oriented section, and information on the SGCC. Consumer feedback was mainly positive with only minor editorial changes integrated into the website. In addition, a section for consumer feedback will be available on the website. Preliminary feedback from consumers indicate the TNGNBS website is a high-quality source of information and resources.

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