PURPOSE: To identify the genetic informational needs and assess the level of awareness about clinical genetic services among adults who use the internet. METHODS: We created an online service called AsktheGeneticist (http://www.askthegen.org) to answer questions about medical genetics. Since 2003, we have received 4497 questions from every US state and 84 countries/territories. Genetic counselors draft answers to the questions submitted. The questions and answers are next reviewed by clinical geneticists, then organized by topic and uploaded to the site. A link to an online website-user satisfaction survey is e-mailed to the user with a link to their Q&A. RESULTS: Before visiting AsktheGeneticist, 20% (50/247) of survey respondents were unaware that genetic services existed. After visiting our website, 23.5% (58) of survey respondents sought contact with a genetics health care professional, compared with <1% of patients who self-refer to a general genetics clinic (binomial test; P < 0.0001). Website users most often sought information about a known genetic condition in their family and the risk of recurrence. CONCLUSIONS: Our data suggest that the internet can be an effective tool for increasing the awareness of genetic services and identifying genetic informational needs of online adults, as well as for connecting patients with genetic services.
PURPOSE: To identify the genetic informational needs and assess the level of awareness about clinical genetic services among adults who use the internet. METHODS: We created an online service called AsktheGeneticist (http://www.askthegen.org) to answer questions about medical genetics. Since 2003, we have received 4497 questions from every US state and 84 countries/territories. Genetic counselors draft answers to the questions submitted. The questions and answers are next reviewed by clinical geneticists, then organized by topic and uploaded to the site. A link to an online website-user satisfaction survey is e-mailed to the user with a link to their Q&A. RESULTS: Before visiting AsktheGeneticist, 20% (50/247) of survey respondents were unaware that genetic services existed. After visiting our website, 23.5% (58) of survey respondents sought contact with a genetics health care professional, compared with <1% of patients who self-refer to a general genetics clinic (binomial test; P < 0.0001). Website users most often sought information about a known genetic condition in their family and the risk of recurrence. CONCLUSIONS: Our data suggest that the internet can be an effective tool for increasing the awareness of genetic services and identifying genetic informational needs of online adults, as well as for connecting patients with genetic services.
Authors: Louise Bordeaux Silverstein; Marina Stolerman; Nadia Hidayatallah; Thomas McDonald; Christine A Walsh; Esma Paljevic; Lilian L Cohen; Robert W Marion; David Wasserman; Siobhan M Dolan Journal: Qual Health Res Date: 2014-08-11
Authors: Tamandra Morgan; Johanna Schmidt; Christy Haakonsen; Janine Lewis; Maria Della Rocca; Stephanie Morrison; Barbara Biesecker; Kimberly A Kaphingst Journal: JMIR Res Protoc Date: 2014-02-24