AsktheGeneticist: five years of online experience.
OBJECTIVE
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.
Tesla
Catherine
C
Department of Human Genetics, Emory University, Atlanta, Georgia 30322, USA. ctesla@emory.edu
Korf
Bruce R
BR
Holt
Lynn
L
Prucka
Sandra
S
Robin
Nathaniel H
NH
Descartes
Maria
M
Lose
Edward
E
Stembridge
Adrya
A
Epstein
Michael
M
Warren
Stephen
S
D000293:Adolescent; D000328:Adult; D000368:Aged; D005817:Genetic Counseling / Q000379:methods* / Q000706:statistics & numerical data*; D006266:Health Education / Q000379:methods; D006801:Humans; D020407:Internet / Q000706:statistics & numerical data*; D008875:Middle Aged; D011795:Surveys and Questionnaires; D055815:Young Adult