The Stanford Preventive Genomic Research Project felt very similar and also vastly different from other community engagement work I’ve done, both inside and outside of the Stanford Health Care system. I was expecting the usual ‘focus group’ types of interactions I’d come to expect from my other PFAC experiences: The institutional representatives ask: Do you like A or B? What are the benefits of A? What are the benefits of B? Oh, is that a suggestion for C? What are the benefits of C? What are the drawbacks? If we are unable to give patrons C, would they prefer A or B? However, Hannah and Daphne began immediately with establishing norms – unwritten but understood agreements in the PFAC world – that allowed for a free-flowing but always respectful discussion. By establishing the boundaries and limits of conversation, trust and respect were ‘baked into’ the following discussions. It helped, I think, that most participants were patients, former patients, or caregivers and were very aware of HIPAA codes; that shared value of privacy enhanced the trust that was necessary to the conversations that occurred over a number of weeks

- Annamaria Smitherman, Member of the Preventive Genomics PFAC Workgroup