Attitudinal concordance toward uptake and disclosure of genetic testing for cancer susceptibility in patient–family member dyads |
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| Authors: | D.W. Shin J. Cho D.L. Roter S.Y. Kim Ji.H. Park B. Cho H.‐S. Eom J.‐S. Chung H.‐K. Yang Jo.‐H. Park |
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| Affiliation: | 1. Department of Family Medicine & Health Promotion Center, Seoul National University Hospital, , Seoul, South Korea;2. Cancer Survivorship Clinic, Seoul National University Cancer Hospital, , Seoul, South Korea;3. Department of Family Medicine, College of Medicine;4. JW Lee Center for Global Medicine, College of Medicine, Seoul National University, , Seoul, South Korea;5. Department of Health Sciences and Technology, School of Medicine & Samsung Advanced Institute for Health Sciences and Technology, Sungkyunkwan University, , Seoul, South Korea;6. Cancer Education Center, Samsung Comprehensive Cancer Center, Samsung Medical Center, Sungkyunkwan University School of Medicine, , Seoul, South Korea;7. Department of Health, Behavior, and Society;8. Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, , Baltimore, MD, USA;9. The Johns Hopkins University, National Human Genome Research Institute, , Baltimore, MD, USA;10. Cancer Policy Branch, National Cancer Control Research Institute, National Cancer Center, , Goyang, South Korea;11. Department of Medicine;12. Division of Health Sciences and Technology, Boston Children's Hospital, , Boston, MA, USA;13. Hematologic Malignancy branch, Research Institute National Cancer Center, , Goyang, South Korea;14. Department of Hematology‐Oncology, School of Medicine, Pusan National University Hospital Medical Research Institute, , Busan, South Korea |
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| Abstract: | Decisions for cancer susceptibility genetic testing (CSGT) uptake and dissemination of results occur within the family context. A national survey was performed with 990 patient–family member dyads (participation rate:76.2%), with paired questionnaires examining attitudes toward CSGT uptake and disclosure of results in response to a hypothetical scenario in which a reliable CSGT was available for the specific cancer a patient was being treated. While most patients and family members responded they would uptake or recommend CSGT if available, concordance between the dyads was poor for both patient's testing (agreement rate 77.5%, weighted κ = 0.09) and first‐degree relatives' testing(agreement rate 78.0%, weighted κ = 0.09). Most patients (93.2%) and family members (92.9%) indicated that patients should disclose positive CSGT results to family members, with dyadic agreement of 89.1% (κ = 0.15). However, there were substantial disagreement regarding when disclosure should take place, who should make the disclosure (the patient or the health care professionals), and to whom the results should be disclosed. Patients and family members may hold different attitudes toward CSGT uptake of and disclosure of results within the family. Our findings reinforce the need for a family system approach to incorporate perspectives of patients as well as their family members. |
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| Keywords: | cancer communication disclosure family genetic |
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