How patients deal with an ambiguous medical test: Decision-making after genetic testing.
Courtney L Scherr, Sanjana Ramesh, Hannah Getachew-Smith and 4 others
PMID 33214013WHAT IT FOUND
Women interviewed about two weeks after an unclear hereditary breast cancer gene result described decisions about online information, family testing, risk management, and sharing.
They relied on genetic counselor interpretation, and the result often prompted vigilance, not distress.
Key findings
01Interviews identified three decision areas: managing the unclear result, managing cancer risk, and sharing the result with others.
02Participants described choosing actions to reduce ambiguity: seeking information online, considering research studies, and encouraging relatives to be tested.
03Most participants said their genetic counselor's interpretation made the result not worrying, but increased awareness led them to plan vigilance and consider risk management.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only 20 women were interviewed, and the authors say they make no claims about generalizability. Most participants were highly educated, and all had insurance, and they were recruited by personal referral, so the sample may not represent other patients. Interviews happened within about two weeks, so some decisions may not have had time to emerge, and recall bias is possible. Many participants did not remember the gene, and the study did not test understanding, so it describes inferences rather than verified comprehension. Coding is subjective; intercoder agreement was 0.86, but the authors say it might not be found with other coders.
Declared interests
The paper is listed as supported by NIH extramural research. No conflict-of-interest statement appears in the supplied text.
The easy way to misread this
Do not read this as proof that explaining an unclear result improves decisions or prevents distress. The study interviewed 20 women about two weeks after their result, did not test understanding, and reports patients' accounts, not outcomes.