Table 3.
Translation and application of PEN-3 analysis to recruitment protocol
| Socio-cultural/behavioral processes | Negative/positive/neutral | Reinforce (+) through program intervention | Revise (−) through program intervention |
|---|---|---|---|
| Some knowledge about DNA | + | • Include elements like DNA sharing with relatives, this can help us to study breast cancer | |
| Genetics on TV | +/− | • Biological samples are part of DNA collection | • Genetic information remains de-identified and confidential |
| Lack of research in African Americans | +/− | • Reinforce that without research our lack of knowledge will remain | • Acknowledge this as the first family-based study |
| Lack of knowledge about breast cancer | +/− | • Include more informational material | • Include links to resources for more information about breast cancer |
| Celebrity spokesperson | + | • Endorsement | • Attempt to make contact |
| Personal experience with studies/genetic testing | + | • Similar DNA collection | • Ensure confidentiality |
| Need for research | + | • Reinforce that without research our lack of knowledge will remain; benefit to future generation | |
| Asking for saliva sample only (not blood) | + | • Reiterate in brochure | |
| Study on breast cancer only | + | • Asking for breast cancer and other cancer-related information only | • Will only ask for medical records relating to breast cancer diagnosis |
| Becoming aware of genetic risk | +/− | • Emphasize the outcomes of linkage study, genetic test is down the road | • Include the outcomes of the study and exactly what will be shared with study participants |
| Need for education | + | • Links with trusted sources of information | |
| Low knowledge about research | +/− | • Emphasize differences in clinical trials and observational studies | |
| Confidentiality concerns | – | • Address specifically in brochure | |
| What I don’t know won’t hurt me/fear of knowing | – | • Benefits to future generations | |
| Guinea pig/Tuskegee | – | • Emphasize that the genetic study is not a clinical trial; will not be asked to take any medications | • Detail process and, consequences of participating, |
| • Provide newsletters and study updates | |||
| Shamefulness/wrongdoing or punishment | – | • Provide educational materials that include known risk factors | • Explain that better education and research will result in better outcomes for future generations |
| Fatalism | – | • Survivor’s narrative | |
| Lack of sharing disease status with family members/family business/communication barriers | – | • Emphasize communication as positive | • Add in elements about family coming together |
| • Family participates together | • Family pictures | ||
| Extensive time commitment | − | • Include a precise estimate of how much time is required for participation | • Shorten whenever possible |
| • Allow participants to complete over the phone |