Community consultation and communication for a population-based DNA biobank: The Marshfield clinic personalized medicine research project

• Published in: American journal of medical genetics. Part A Vol. 146A; no. 23; pp. 3026 - 3033
• Main Authors: McCarty, Catherine A., Chapman-Stone, Donna, Derfus, Teresa, Giampietro, Philip F., Fost, Norman
• Format: Journal Article
• Language: English
• Published: Hoboken Wiley Subscription Services, Inc., A Wiley Company 01-12-2008; Wiley-Liss
• Subjects: Adult; Biological and medical sciences; Communication; Community Health Services; Community Participation; consumer participation; Databases, Nucleic Acid; Disease - genetics; DNA - genetics; ethics consultation; Female; genetics; Health Services Research; Humans; Male; Medical genetics; Medical sciences; Personal Health Services; Referral and Consultation; Wisconsin; Clinic; Medicine; Ethics; ethics consultation; DNA; Consultation; Genetics; Population; Research; consumer participation; Community; Communication
• ISSN: 1552-4825; 1552-4833
• DOI: 10.1002/ajmg.a.32559

The purpose of this article is to describe community consultation and communication efforts for the Personalized Medicine Research Project (PMRP), a population‐based biobank. A series of focus group discussions was held in the year preceding initial recruitment efforts with potentially eligible community residents and slightly less than a year after initial recruitment with eligible residents who had declined participation in PMRP. A Community Advisory Group, with 19 members reflecting the demographics of the eligible community, was formed and meets twice yearly to provide advice and feedback to the PMRP Principal Investigator and the local IRB. Ongoing communication with study subjects, who consent on the condition that personal genetic results will not be disclosed, takes place through a newsletter that is distributed twice yearly, community talks and media coverage. Most focus group participants were concerned about the confidentiality of both their medical and genetic data. Focus group discussions with eligible residents who elected not to participate in PMRP revealed that many knew very little about the project, but thought that too much information had been provided, leading them to believe that it would take too long for them to understand and enroll in the study. In conclusion, an engaged community advisory group can provide a sounding board to study investigators for many study issues and can provide guidance for broader communication activities. Researchers need to balance the provision of information for potential subjects to make informed decisions about study participation, with respect for individuals' time to read and interpret study materials. © 2008 Wiley‐Liss, Inc.