Views of nonmedical, health system professionals regarding the return of whole genome sequencing incidental findings.

BACKGROUND: Use of genome sequencing in the clinic continues to increase. In addition to its potential to provide findings of clinical benefit, it also has the potential to identify findings unrelated to the indication for testing (incidental findings). Incidental findings are the subject of considerable debate, particularly following the publication of recommendations by the American College of Medical Genetics and Genomics. This debate involves how and which results should be returned as well as stakeholders' desires for such results. Part of the difficulty in determining best practice in relation to returning incidental findings is the dearth of empirical data available regarding laypersons' attitudes and desire for the sometimes controversial information.
METHODS: In an effort to contribute data on views regarding the return of incidental findings following genome sequencing in a clinical setting, a survey specifically designed around the various types of incidental findings that occur, ranging from clinically actionable to nonactionable, was administered to a nonmedical population of medical coders working at a medical school (N = 97). Almost all (98%) of the respondents were women, 80% had 6 or more years of experience as a medical coder, and about three-fourths (74%) of participants reported that they had children.
RESULTS: The group surveyed was considerably more interested in receiving all types of results for both themselves and their children than previously surveyed genetics professionals.
CONCLUSION: Results from this study offer a snapshot of opinions beyond those of the professional genetic community and demonstrate a striking difference between genetic professionals and a more lay population in terms of their attitudes and desires regarding the return of incidental findings. Additional research is needed to explain the nuances in the perspectives motivating these variations.