The Importance of Patient Engagement

摘要

We read with interest Terry's recent editorial, "Don't Just Invite Us to the Table: Authentic Community Engagement" (Terry 2013). Terry makes the key point that there are merits to community engagement in developing policies affecting individuals and their families undergoing clinical exome and genome sequencing that can generate incidental findings. Managing incidental findings from genomic testing is an ongoing challenge, as evidenced by the volume and intensity of publications and debates examining the topic. We endorse Terry's call for purposeful patient, public, and professional interaction and opportunity for constructive discussion and debate on this topic. Broad proactive engagement creates an opportunity to develop guidelines and policies that not only identify and anticipate nuanced issues surrounding the disclosure of incidental findings but also identify and address salient issues. Perspectives of those who are healthy;have rare disorders or common chronic conditions;and are from diverse socioeconomic, ethnic, cultural, and regional backgrounds are needed.