An evaluation framework to assess educational genetic websites: Are they meeting public needs?

Abstract

The current focus of genetic research on complex diseases will require more research participants to be recruited. Informed consent can be difficult to achieve in these settings so the public should have the opportunity to become informed about genetic research prior to participating. To this end, the hopes--potential of genetics to improve health and individual benefits of participation--and concerns--security of information and discrimination--of various United States publics were determined by reviewing public opinion about genetics as reported in the literature. These concepts were used to develop an evaluation framework to assess how well public websites addressed these topics and other key genetic literacy concepts. The framework was tested in 7 educational websites. Screenshots of these seven websites can be found in the supplementary files. The tool showed the strengths of the sites as well as where there is room for improvement. Some websites are meeting some of the public's needs but none are addressing every need. Public education and genetic literacy has room for growth and improvement if we are to accomplish our goal of an informed public to be future genetic research participants.