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"They're Not Going to Do Nothing for Me": Research Participants' Attitudes towards Elective Genetic Counseling.

Authors :
Sutton EJ
Beck AT
Gamm KO
McCormick JB
Kullo IJ
Sharp RR
Source :
Journal of personalized medicine [J Pers Med] 2020 Sep 24; Vol. 10 (4). Date of Electronic Publication: 2020 Sep 24.
Publication Year :
2020

Abstract

As applications of genomic sequencing have expanded, offering genetic counseling support to all patients is arguably no longer practical. Additionally, whether individuals desire and value genetic counseling services for genomic screening is unclear. We offered elective genetic counseling to 5110 individuals prior to undergoing sequencing and 2310 participants who received neutral results to assess demand. A total of 0.2% of the study participants accessed genetic counseling services prior to sequencing, and 0.3% reached out after receiving neutral results. We later conducted 50 interviews with participants to understand why they did not access these services. Many interviewees did not recall the availability of genetic counseling and were unfamiliar with the profession. Interviewees described not needing counseling before sequencing because they understood the study and felt that they could cope with any result. Counseling was considered equally unnecessary after learning neutral results. Although the participants had questions about their results, they did not feel that speaking with a genetic counselor would be helpful. Genomic screening efforts that employ opt-in models of genetic counseling may need to clarify the potential value of genetic counseling support from the outset and feature genetic counseling services more prominently in program materials.

Details

Language :
English
ISSN :
2075-4426
Volume :
10
Issue :
4
Database :
MEDLINE
Journal :
Journal of personalized medicine
Publication Type :
Academic Journal
Accession number :
32987879
Full Text :
https://doi.org/10.3390/jpm10040143