Table 2.

Selected Open-Ended/Write-In Comments Regarding the Content Within the Four Program Modules

Program module	Participant comments
Clinical trials	“I enjoyed the information regarding clinical trials. For some reason I didn't know that people who were not ill could participate. It makes sense to have someone who has the illness in the family yet does not have it to participate.”
	“I have experience participating in a clinical trial, so I could relate more. Despite the information in this website, it still feels risky to participate in any study other than a chart review, because of the history of abuse that has happened to African Americans and Jews.”
Medical record research	“This module seems most “layman”-friendly. I can easily relate it to my medical experience, i.e., anyone who's been to a doctor knows what a chart is.”
	“It provides for an additional means of participation which might make it easier for folks to participate. Also, I was not aware of Chart Review studies.”
	“I have been asked to participate in chart reviews. I was leary (sic) because of my concerns of the information being misused. Now that I have been informed that the data can be used without my consent in most states, I might as well participate. I was aware that names are not identified, but I still am little leary (sic), particularly when research is being conducted by majority institutions with few African Americans on staff. My opinion is based on personal experience.”
Genetic/biobank research	“When I first started reading this section, I felt a little uneasy; however after reviewing the information, I was able to understand how this information could be of benefit to me and my health. As a participant in this survey, I am encouraged to see the opening up of opportunities for African American Women. Historically, we have not taken advantage of programs designed to detect, address or prevent problems related to our health. In many cases we are afraid of what might be discovered, therefore, there is a failure to take advantage of various services. This module appeared to have been easier for me to relate to. I was able to make the connection to why it is important to become an involved participant and how being a participant not only is instrumental in my health, but it provides a means for shaping women health particularly for African American women… Thank you for including me in this worthwhile endeavor.”
Research ethics	“The module provided the confirmation I needed to completely re-trust a scientific research system that was once broken and unjust. The skepticism was instilled by stories of the past, in addition to, shared experiences by family members.”
	“I enjoyed all of the modules. The research ethics was interesting, just not sure how strongly it is enforced based on the Lacks case, which was fairly recent in our history. Not sure some discrimination is not still occurring with research.”