Quality of Genetic Information on the Internet

Numerous standards are evolving regarding evaluation, documentation, and assessing quality of Internet Information.  

Parents, family members, and health care professionals seeking medical information on the Internet should carefully evaluate what is found to decide how useful it is. Helpful information includes identity of the authors, as well as their qualifications and affiliations such as a medical center, university, hospital or government agency (such as .edu, .gov and sometimes .org). Date of information is helpful, as information can be dated, or newer information and treatments may be available. Information may differ if the information is provided by a medical expert, or is personal information written by an individual based on their own experience. Often interpretation of genetic information for a particular individual involves a physical exam, and a review of relevant medical records including diagnostic testing on the individual and possibly other family members. Internet information may provide background information to help individuals with discussions with their health care provider.

Many sites include recommendations and checklists:

Genetics Resources and the Internet Publications



People First Language (Writing about Individuals with Genetic Conditions)

compiled by Debra Collins, M.S., CGC

Revised August 2000, Cannot perform flastmod(): Win32 Error Code = 87

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Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu


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