How Parents Search, Interpret, and Evaluate Genetic Information Obtained from the Internet
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This study describes how parents of a child referred for genetic services searched the Internet for information, summarizes how they interpreted and evaluated the information they obtained, and identifies barriers that they encountered. Audio-taped interviews were conducted with 100 ethnically diverse families referred to a pediatric genetics clinic. After transcription, coded text was entered into a software program (QSR N6) for searching and data retrieval. Matrices were created to systematically categorize and compare families’ Internet use. Eighty-three percent of families obtained Internet information about the diagnosis, the clinic visit, and/or treatment and services. Those not conducting searches lacked access, Internet experience, or a diagnostic term and had lower incomes and less education, regardless of ethnicity. Families sought information in preparation for the clinic visit but barriers to obtaining and interpreting relevant information were common. Parents’ Internet searching experiences illustrate common barriers to obtaining and understanding genetic information. Identifying them can help genetic counselors facilitate parents’ searches for relevant information.
KeywordsGenetic counseling Genetic services Health knowledge Attitudes Parents Practice Internet Consumer health information Health literacy Qualitative research
The Culture and Family Interpretations of Genetic Disorder Project (1 R01 HG02164—Debra Skinner, PI), which provided the ethnographic data for this article, was funded by the Ethical, Legal and Social Implications (ELSI) Research Program of NIH/NHGRI.
The authors would like to thank Kristie Kuczynski and Rebecca Schaffer for their contributions to the analysis.
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