TGP is the only knowledge-base powering research that has an “informed cohort” of research subjects who can actively participate in the discovery of solutions to disease. By allowing participants to be partners in their own research, we have the ability to capture more data and create powerful studies. Our ongoing communication with our participants allows us to deliver updates and cutting-edge research results to families and individuals. While this is of obvious benefit to all, the connections between researchers and study participants must be done in a “de-identified” fashion to eliminate the possibility of a breach of confidence.
That is why we have developed an information technology communication system that is HIPAA-compliant (the Indivo PCHR system), as well as an Informed Cohort Oversight Board (ICOB) made up of ethicists, scientists, physicians, genetic counselors, and participant advocates to ensure safety and ethics throughout the partnership process. Because the idea of the return of research results is so unique, especially in a pediatric setting, the TGP places top priority on providing appropriate, beneficial information to our participants. To this end, the ICOB is dedicated to developing and utilizing thoughtful and ethical policies surrounding the return of research results.
The key role for the ICOB will be to evolve oversight that:
The key additional values for the ICOB include: