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Experiences and lessons learned by genetic counselors in returning secondary genetic findings to patients
Author(s) -
Rost Carly,
Dent Karin M.,
Botkin Jeffrey,
Rothwell Erin
Publication year - 2020
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1002/jgc4.1292
Subject(s) - genetic counseling , categorization , comprehension , medicine , genetic testing , qualitative research , psychology , clinical psychology , public health , medical genetics , family medicine , medical education , nursing , genetics , social science , philosophy , linguistics , sociology , gene , biology , epistemology
Few studies have explored the real‐world experiences and strategies of genetic counselors involved in the process of returning secondary findings (SFs). This study aimed to describe and categorize the experiences for the return of SFs from clinical sequencing. Semi‐structured telephone interviews with 21 genetic counselors representing 56 incidences were conducted. A content analysis was conducted on the transcripts through an iterative, team‐based approach. Four common categories emerged across all interviews. These included (a) the importance of pretest counseling for the return of SFs, (b) how primary test results influenced the level of importance placed on the SFs, (c) patients' emotional reactions from receiving SF results, and (d) how returning SFs changed future pretest counseling and consent. This study identified experiences and common practices by genetic counselors who returned SFs. More research is needed to assess how genetic counselors' specific strategies improve patient comprehension and medical actions.