One of the most important issues in recent human genomic research is the challenge of return of individual genomic results of research participants. Since American College of Medical Genetics and Genomics (ACMG) published a set of recommendations of return of secondary findings (previously called incidental findings) in the clinical context, return of individual genomic results in the research context has been debated and discussed recently.
Our Tohoku Medical Megabank Project, we have set a plan of return of individual genomic results to the participants of our two population cohort studies; the Tohoku Medical Megabank Project Community-Based Cohort Study and the Tohoku Medical Megabank Project Birth and Three-Generation Cohort Study, if participants has consent to return and desire to be disclosed the individual results.
From an academic standpoint, recent articles recommend if results are actionable, the results should be offered to participants, and participants should have the right to refuse any results that are offered. In contributor's view, recent literature showed a majority of participants favored disclose of genetic results as well as secondary findings. But the actual attempt or trials of return of individual genomic results in the research context have been very limited. This is because of number of medical, psychosocial, ethical and financial issues, and due to lack of experiences.
To overcome those issues of return of genomic results to Tohoku Medical Megabank Project participants, the Group of Return of Genomic Results (ROGR) was established. The Group of ROGR will discuss the issues including list of actionable/returnable genomic results, ROGR process, transition from research to clinical setting, collaboration of local medical communities, attitude and readiness of participants, and the cost. Also Group of ROGR will organize the "Return of Genomic Results Review Committee", and create opportunities to talk with group of participants in order to implement this cutting-edge challenge for the benefit to all participants.
Acting Group Leader
See details >
Adviser to the Acting Group Leader
See details >