Table 4 Illustrative comments of participants’ response to genetic counselling received
Most useful aspect of genetic counselling | |
1. Increase knowledge, gain information and understanding | |
• “Knowing my risks and having them explained in a straight-forward manner. Knowledge gives you the power to deal with the situation” (P3356 – BRCA2 carrier) | |
• “Having someone to call with questions, someone to turn to for information. Easy access to counsellors was much appreciated” (P4045 – Not tested) | |
• “Gave me more info about FPC than I was aware of earlier” (P3652 – No mutation identified) | |
2. Risk assessment and genetic testing | |
• “Getting a written risk assessment” (P3475 – Not tested) | |
• “Finding out about risk factors for PC and understanding likelihood of cancer in my family being genetic” (P3103 – Not tested) | |
• “Absence of BRCA1/2 mutations meant decreased potential risk for my daughters” (P3832 – No mutation identified) | |
3. Psychosocial benefits (e.g. reassurance) | |
• “Increased my confidence that more research is being conducted to develop cures. Being part of the program enables screening and hopefully early detection in the event I contract the disease” (P4122 – BRCA2 carrier) | |
• “Exploring explicitly my possible concerns or reactions” (P3920 – No mutation identified) | |
• “Talking about my problems with an empathetic expert is always a positive” (P4056 – No mutation identified) | |
4. Benefit to other family members/society motivated research participation | |
• “We might find the [PC] gene. Although it may not help me, it might help my children and others. I know where the testing is up to, and I am informed” (P3126 - No mutation identified) | |
• “Useful for those doing the research” (P4024 – Not tested) | |
• “Reassurance that research is continuing to prevent/cure PC” (P3139 – No mutation identified) | |
Least useful aspect of genetic counselling | |
1. Not specific to PC | |
• “As a definitive genetic link is yet to be found, a clear risk factor cannot yet be given” (P4139 – Not tested) | |
• “I was not given any info regarding PC” (P3954 – Not tested) | |
2. Inadequate information provision | |
• “Counselling was a complete waste of time - nothing was discussed concerning cancer. Lack of coordination, no written summary received” (P3146 – Not tested) | |
• “The risk wasn’t clearly explained at the session” (P3475 - No mutation identified) | |
• “Not a useful session. The genetic basis of familial pancreatic cancer is unknown” (P4018 – Not tested) | |
3. Limitations of “counselling” | |
• “After caring for 2 family members with pancreatic cancer, and watching another, I don’t know if counselling helped me” (P3127 – No mutation identified) | |
• “The worry caused after the initial consultation” (P3942 – BRCA2 carrier) |