Proposed Solutions

Despite the wealth of genetic data that is being generated by research and clinical laboratories, currently, none of the PCORI funded projects include genetic data for evaluating health outcomes that matter to patients. The rapid growth in the availability and utilization of genetic information will require PCORI research to enhance the process to enable the consideration of genetic findings as they pertain to clinical outcomes. Currently, despite massive investments in genomic research, genetic susceptibility factors are not widely utilized in making health care decisions. In our opinion, the main reasons for this barrier are:

  1. lack of communication between stakeholders and
  2. the complex nature of both genetics and disease pathology  

Through the formation of the Genetic Concept Community Advisory Board, we aim to listen and learn the experiences, preferences, and needs of a wide range of stakeholders (researchers, patients/family members and physicians/healthcare providers) in this context and collectively draw a potential workplan/road map to address the existing barriers.