Chunk #88 — PART II. CORE QUESTIONS — F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them — Step 2: Analyzing a particular finding
Several questions will routinely arise. First, if the finding (e.g., the BRCA2 variant) is already available to patients through clinical genetics testing, does this alone mean that researchers and biobanks do not have any duty to return it? We suggest that when the patient’s medical records reveal prior diagnosis then there is no duty to return the finding. However, in the absence of documented prior diagnosis, the theoretical availability of findings through genetic testing outside of the research context does not reduce the duties incumbent on researchers and biobanks to address and return IFs and IRRs. Findings that are clinically actionable are often actionable in a particular timeframe; refraining from returning the IF or IRR now because at some time in the future the contributor may (or may not) seek clinical genetic testing may significantly reduce the utility of the information or eliminate utility entirely. When researchers encounter IFs or IRRs, it is often the case that theoretically this same finding could be produced in a clinical setting. This is especially true of IFs, which are, by definition, not the
