Physicians’ perspectives on receiving unsolicited genomic results

Abstract

PurposePhysicians increasingly receive genomic test results they did not order, which we term “unsolicited genomic results” (UGRs). We asked physicians how they think such results will affect them and their patients.MethodsSemi-structured interviews were conducted with adult and pediatric primary care and subspecialty physicians at four sites affiliated with a large-scale return-of-results project led by the Electronic Medical Records and Genomics (eMERGE) Network. Twenty-five physicians addressed UGRs and: 1) perceived need for actionability, 2) impact on patients, 3) health care workflow, 4) return of results process, and 5) responsibility for results.ResultsPhysicians prioritize actionability of UGRs and the need for clear, evidence-based “paths” for action coupled with clinical decision support (CDS). They identified potential harms to patients including anxiety, false reassurance, and clinical disutility. Clinicians worried about anticipated workflow issues including responding to UGRs and unreimbursed time. They disagreed about who was responsible for responding to UGRs.ConclusionThe prospect of receiving UGRs for otherwise healthy patients raises important concerns for physicians. Their responses informed development of an in-depth survey for physicians following return of UGRs. Strategic workflow integration of UGRs will likely be necessary to empower physicians to serve their patients effectively.

What Results Should Be Returned from Opportunistic Screening in Translational Research?

“…After all, returning individual genetic research results to participants and their clinicians is labor intensive-at VUMC, it required thousands of person-hours-and often required surmounting a variety of hurdles. Moreover, as we showed previously [19], clinicians who care for these participants varied widely in their views about whether these results were helpful for participants. Most noted that receiving these results significantly affected their workflow, and a few refused to return results, saying that research personnel should perform this function.…”

“…Even when the time added is only minimal, clinicians in these situations often already feel overly put-upon by daily tasks [34]. Many clinicians working in primary care feel uncomfortable returning these results [18,19] and do not feel that it is their responsibility [35], especially when the results are not considered medically actionable [19].…”

“…One of the authors (EWC) reached out to individual providers by email or phone up to three times. The clinician interview guide was developed in the same manner as that described for the participant cohort, informed by earlier interviews, and is available in the online supplement [19].…”

“…These costs must also be considered when setting criteria for which results to disclose and how to do so. Non-specialist clinicians sometimes feel unprepared to address these issues [18] and worry about the effect of returning these results on their time and the workflow of their clinics [19].…”

At the Research-Clinical Interface

“…Because participant interest and ethical consensus supporting this disclosure are on the rise, however, more research is needed to understand how to return research results effectively and responsibly. An important component of this challenge is how to define and develop resources for clinicians in anticipation of patients seeking guidance on results of research participation and the feasibility and costs of doing so (49). Decision making about returning genetic research results depends on the institutional context, participant information needs, and what is known about the implications of the specific result.…”