Program Strategy 2: Public Awareness and Education

All funded programs are required to conduct activities to increase awareness and educate the public, or specific target populations, on topics related to family history and cancer genomics. The overall goals of these activities are to—

  • Provide accurate and, when appropriate, tailored information.
  • Provide cues to action for individuals and families to elicit change in attitudes, beliefs, and behaviors.

Topics addressed in public awareness and education efforts may include, but are not limited to—

  • Screening of family history for cancer risk.
  • Benefits of genetic counseling and testing for individuals at increased risk.
  • Types of genetic testing available, including panel testing.
  • Limitations of direct-to-consumer testing options.
  • Privacy protections for genetic information, such as GINA.
  • Decision-making on genetic testing.
  • Cancer screening considerations for those at increased risk due to family history of cancer or genetic mutation.
  • Methods to manage cancer risk, including behavior change (such as smoking cessation, reduced alcohol consumption, maintaining a healthy weight, and engaging in regular physical activity), cancer screening, chemoprevention, and prophylactic surgery.

Educational efforts should discuss cancer types associated with hereditary cancer syndromes, specifically HBOC and LS, including breast, ovarian, pancreatic, prostate, colorectal, and uterine/endometrial cancers. Genes associated with HBOC and LS include BRCA1/2 and the mismatch repair genes. Other genes may be included in education efforts when relevant, such as when discussing additional cancer types, other hereditary cancer syndromes, and multi-gene panel testing.

The types of resources that should be developed and disseminated to aid in education efforts may include, but are not limited to—

  • Websites.
  • Social media channels, and messages and materials intended for sharing on social media.
  • Pamphlets, brochures, and fact sheets.
  • Decision aids.
  • Public service announcements.
  • Instructional or educational videos and podcasts.
  • Family history collection tools.

Implementation methods for public awareness and education activities could include, but are not limited to—

  • Small media.
  • One-on-one education.
  • Group education.
  • Mass media or digital media outreach.
  • Multi-component education approaches.

In high-risk populations, programs should explore conducting activities beyond the individual level and consider family-based educational activities that may promote cascade screening.

When developing educational resources, recipients should take into account best practices in health literacy and numeracy. Programs should also consider the use of theoretical frameworks, such as the health belief model or social cognitive theory, and interventions from the literature. Programs should develop resource dissemination plans.

Evaluation of educational events or activities is an essential component of this strategy. Specifically, understanding reach, efficacy, and activity implementation are of upmost importance. Measuring changes in awareness, knowledge, beliefs, and attitudes should be a component of evaluation efforts. In addition, measuring changes in behavior, if feasible, is highly desired.