199664 Informational content of websites offering health-related genetic tests direct to consumers

Monday, November 9, 2009: 5:30 PM

Christina Lachance, MPH , Nhgri, HHS/NIH, Rockville, MD
Lori Erby, PhD , Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Beth M. Ford, SM , Social and Behavioral Research Branch, NIH/National Human Genome Research Institute, Bethesda, MD
Vincent C. Allen, BA , Social and Behavioral Research Branch, NIH/National Human Genome Research Institute, Bethesda, MD
Kimberly Kaphingst, ScD , Social and Behavioral Research Branch, NIH/National Human Genome Research Institute, Bethesda, MD
Currently, genetic tests are being offered direct to consumer (DTC) via the Internet, including tests for susceptibility to complex, multifactorial diseases. The science behind these tests is new, and the clinical utility unproven, yet consumers may already be using the results to make important health decisions. The present study assesses the informational content of websites offering health-related genetic tests directly to consumers and examines implications for health decisions.

Websites for 30 companies offering health-related DTC genetic tests were identified through web searches and publicly available lists. We developed a codebook to examine the sites' content, and the difficulty of that content (e.g., literacy demands, usability), based on prior research. Two independent coders are evaluating each website.

We will present results assessing site content, including: health conditions and markers being tested, stated benefits and limitations of the test(s), role of health care providers in the testing process, and privacy and data-sharing policies. We will also present literacy demand data (e.g., SMOG and Fry readability scores), along with usability results (e.g., presentation of risk information, use of graphics).

Preliminary results suggest that DTC testing websites contain content that would be difficult for the majority of adults to use and fully understand, with substantial variation across content topics (e.g., mean readability scores for limitations/benefits sections of grade 16, privacy sections grade 14, and testing process sections grade 11). Implications for whether individuals can understand the provided information and make truly informed decisions about testing will be discussed.

Learning Objectives:
1)Describe the informational content, usability and literacy demands of websites offering health-related genetic tests directly to consumers 2)Evaluate the literacy demands of DTC websites in light of the health literacy skills of the average American adult consumer 3)Assess the implications of the findings for health-related decision making in the DTC testing era

Keywords: Genetics, World Wide Web

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to present this data because I received a Masterís Degree in public health in 2005, have participated in the conduct of public health research since 2001, and have delivered presentations on genomics-related studies for the past 4 years. I am one of the researchers who was involved in the design, development, implementation of the study. I am also a coder on the project and will be one of the authors on the eventual manuscript to be published.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.