249234 Messages About Genomics and Genetic Testing: What Resonates with the Interested Public?

Sunday, October 30, 2011

Nina R. Goodman, MHS , Office of Communications and Education, National Cancer Institute, Rockville, MD
Sheri D. Schully, PhD , Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, MD
Muin Khoury, MD, PhD , Office of Public Health Genomics, Centers for Disease Control and Prevention, Atlanta, GA
Meghan K. Gleason, MSW , Department of Rehabilitation Medicine, NIH Clinical Research Center, Bethesda, MD
Thomas Lehman, MA , Center for Social Marketing and Behavior Change, AED, Washington, DC
Michael Kelly, MHS , Center for Social Marketing and Behavior Change, AED, Washington, DC
The National Cancer Institute's (NCI) Public Health Genomics Interest Group, in collaboration with NCI's Division of Cancer Control and Population Sciences (DCCPS) and Office of Communications and Education (OCE), developed eight draft messages to help communicate key information about personal genomics and genetic testing to members of the general public who may be interested in these topics. The messages were intended to provide balanced and impartial information that may be useful for consumers when making informed health decisions related to genetic testing.

In order to learn more about information needs and preferences, NCI conducted focus groups and triad discussions with two key audiences: consumers with varying levels of interest in and/or experience with personal genomics and/or genetic testing, and advocates representing the interests of people affected by diseases with a genetic component. The objectives of these discussions were to assess the level of interest and perceived usefulness of the draft messages, inform the development of final messages, and explore preferences for formats and sources for related health information on the topic of personal genomics and genetic testing.

The findings from this research illustrate the importance of crafting messages around the topic of genomics and genetic testing with great care. The key audiences had clear preferences in the types of content they were expecting, the order in which information was presented to them, and the expected tone of information coming from a government institution. These insights will be used to inform the development of NCI materials on this important topic area.

Learning Areas:
Communication and informatics

Learning Objectives:
Identify three preferences of the general public in terms of how to present introductory information about genomics and genetic testing.

Keywords: Genetics, Communication

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have a Masters in Health Sciences degree from the Johns Hopkins Bloomberg School of Public Health as well as extensive experience as a Public Health Advisor at the National Cancer Institute (NCI) at the National Institutes of Health (NIH). Specific to this content, I acted as a lead researcher within the Trans-NIH Genetics Communications Group. This working group was created at the request of the NIH Director to address the anticipated information needs of the public related to the topic of personal genomics and genetic testing, given the recent increase in availability of direct-to-consumer genetic testing options. I have led several research projects in the area of communications and genetic testing at the NCI and have presented findings from this research at a previous APHA conference.
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.