9º World Congress on Health Information and Libraries

Salvador, Bahia - Brazil, September, 20 to 23 - 2005


4th Regional Coordination Meeting of the VHL

September, 19 to 20 - 2005

Attitudes and practices towards genetics information seeking by members of online support groups

  • School of Information and Library Science, University of North Carolina at Chapel Hill  - USA

Research has shown that the Internet is well used by patients and their families to support their health information needs. Several sources exist for accessing health information on the Internet.  Among these sources are online support groups. 

Information pertinent to the genetics of both rare and more common disorders is becoming increasingly available on the Internet. Results of a study reported by Case (2004) found that in their quest to find genetics information consumers prefer to search the Internet first, before consulting other sources such as libraries and health care providers. This preference exists despite the fact that genetics information can be difficult to understand.

It is against this background, that a study was conceived to investigate the genetics information seeking behavior of members of online support groups for inflammatory breast cancer, Fabry disease and albinism.  The presentation will focus on the outcome of the study in terms of members’ interest in finding genetics information, sources used, purposes for seeking genetics information, confidence in their ability to understand genetics information, as well as perceptions of the role of the support groups, as related to genetics information.

Case DO, Allard SL, Kelly KM.  From two-step flow to the Internet: the changing array of sources for genetics information seeking.  Journal of the American Society for Information Science and Technology 2004;55(8):660-669.