Chunk #103 — PART II. CORE QUESTIONS — F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them — Step 4: Recontacting the contributor to offer the finding
The “how” of recontact and method of reporting IFs and IRRs are subjects of active research. Kohane et al.47 recommend a computer interface to offer findings, governed by ICOB determination of returnable findings and contributors’ individual expressions of preference for certain kinds of findings through the interface. Roberts et al.114 have offered research participants a choice between in-person and telephone genetic counseling to reach those who have permanently or seasonally relocated. The Coriell Personalized Medicine Collaborative has developed a methodology and format for return, differentiating risks based on genetic and non-genetic factors.106 Both the REVEAL Study (focusing on APOE and the risk of Alzheimer’s disease) and ClinSeq (focusing on atherosclerotic disease) have developed means for reporting individual findings as well.115,116 In all of these cases, what is offered back to contributors (or research participants) are not raw data, but rather interpreted findings that have been selected as appropriate for return.
