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Dataset Information

Is "incidental finding" the best term?: a study of patients' preferences.


ABSTRACT:

Purpose

There is debate within the genetics community about the optimal term to describe genetic variants unrelated to the test indication but potentially important for health. Given the lack of consensus and the importance of adopting terminology that promotes effective clinical communication, we sought the opinion of clinical genetics patients.

Methods

Surveys and focus groups with two patient populations were conducted. Eighty-eight survey participants were asked to rank four terms according to how well each describes results unrelated to the test indication: incidental findings, secondary findings, additional findings, and ancillary findings. Participants in six focus groups were guided through a free-thought exercise to describe the desired attributes of such a term and

SUBMITTER: Tan N 

PROVIDER: S-EPMC5291803 | biostudies-literature | 2017 Feb

REPOSITORIES: biostudies-literature