Does does it matter where and how we are told about genetic test results? And does the answer to that question differ depending on whether the results are negative rather than positive?
Earlier this week I read a blog that started me thinking about these issues because the woman had been told her negative test results by email when she was at work:
I received an email from Dr. Stoutenburg Wednesday which read, “I just received your BRCA 1 and 2 results. I am sure that you are eager for the result. No mutation was detected. Thus, this cancer was not caused by an inherited abnormality in either of these genes. This is a good thing! We don’t need to consider preventative mastectomies and don’t need to consider testing other family members.”She was clearly relieved by this news and the fact that it came by in the middle of her work day thrilled her. She was happy to get that electronic missive. But what if the news had been different? In the book Pretty Is What Changes, author Jessica Queller describes how she responded when the bad news of a negative test result that was sprung on her via a phone call at work. She describes shock, anxiety, distraction, bewilderment and denial. Following the phone call that advised her of the positive test results she received the written report, which she shoved into a drawer and ignored for several months. At the time, she had no idea about the level of risks associated with testing positive, despite the fact that her mother had both breast and ovarian cancer. The doctor who tested her did no genetic counseling prior to her test and likewise did nothing to explain the results when he communicated them on the phone. She was on her own. Fortunately she is a smart woman who figured much out through her own research and she was smart enough to go in search of doctors who could provide better guidance than the one who performed her test.
I received my results on the phone also but my experience was vastly different as I was tested by a doctor with whom I a had a long relationship and I had hours of counseling prior to even deciding to be tested. I know now that the best way to communicate genetic test results is by a genetic counselor and in person but at the time, if I had known that my doctor had the results and that he would not tell them to me over the phone I would have been dismayed.