“They’re Not Going to Do Nothing for Me”: Research Participants’ Attitudes towards Elective Genetic Counseling
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 in...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2020-09-01
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| Series: | Journal of Personalized Medicine |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2075-4426/10/4/143 |
| _version_ | 1797552686617329664 |
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| author | Erica J. Sutton Annika T. Beck Kylie O. Gamm Jennifer B. McCormick Iftikhar J. Kullo Richard R. Sharp |
| author_facet | Erica J. Sutton Annika T. Beck Kylie O. Gamm Jennifer B. McCormick Iftikhar J. Kullo Richard R. Sharp |
| author_sort | Erica J. Sutton |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-10T16:04:38Z |
| format | Article |
| id | doaj.art-55cba4076c3d444d8490533f57b96184 |
| institution | Directory Open Access Journal |
| issn | 2075-4426 |
| language | English |
| last_indexed | 2024-03-10T16:04:38Z |
| publishDate | 2020-09-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Journal of Personalized Medicine |
| spelling | doaj.art-55cba4076c3d444d8490533f57b961842023-11-20T14:59:47ZengMDPI AGJournal of Personalized Medicine2075-44262020-09-0110414310.3390/jpm10040143“They’re Not Going to Do Nothing for Me”: Research Participants’ Attitudes towards Elective Genetic CounselingErica J. Sutton0Annika T. Beck1Kylie O. Gamm2Jennifer B. McCormick3Iftikhar J. Kullo4Richard R. Sharp5Biomedical Ethics Research Program, Mayo Clinic, Rochester, MN 55905, USABiomedical Ethics Research Program, Mayo Clinic, Rochester, MN 55905, USADepartment of Psychiatry and Psychology, Mayo Clinic, Rochester, MN 55905, USACollege of Medicine, Department of Humanities, Pennsylvania State University, Hershey, PA 17033, USADivision of Cardiovascular Diseases, Mayo Clinic, Rochester, MN 55905, USABiomedical Ethics Research Program, Mayo Clinic, Rochester, MN 55905, USAAs 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.https://www.mdpi.com/2075-4426/10/4/143genomic sequencinggenetic counselinginformed consentpatient communicationreturn of resultsethical |
| spellingShingle | Erica J. Sutton Annika T. Beck Kylie O. Gamm Jennifer B. McCormick Iftikhar J. Kullo Richard R. Sharp “They’re Not Going to Do Nothing for Me”: Research Participants’ Attitudes towards Elective Genetic Counseling Journal of Personalized Medicine genomic sequencing genetic counseling informed consent patient communication return of results ethical |
| title | “They’re Not Going to Do Nothing for Me”: Research Participants’ Attitudes towards Elective Genetic Counseling |
| title_full | “They’re Not Going to Do Nothing for Me”: Research Participants’ Attitudes towards Elective Genetic Counseling |
| title_fullStr | “They’re Not Going to Do Nothing for Me”: Research Participants’ Attitudes towards Elective Genetic Counseling |
| title_full_unstemmed | “They’re Not Going to Do Nothing for Me”: Research Participants’ Attitudes towards Elective Genetic Counseling |
| title_short | “They’re Not Going to Do Nothing for Me”: Research Participants’ Attitudes towards Elective Genetic Counseling |
| title_sort | they re not going to do nothing for me research participants attitudes towards elective genetic counseling |
| topic | genomic sequencing genetic counseling informed consent patient communication return of results ethical |
| url | https://www.mdpi.com/2075-4426/10/4/143 |
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