We’ve long known that some diseases run in families, but in only the last few decades, have we been able to identify specific genes that may pre-dispose someone to a specific illness. What to do with that kind of information remains a very personal question, raising new issues about not only choice, but how we talk about those decisions.
Kelly Pender teaches English at Virginia Tech. Her area of focus is rhetoric—or the way we frame and communicate ideas to make a point. In her new book titled, ‘Being at Genetic Risk’ she focuses on how we talk about disease, treatment, and medical decisions with doctors and with each other. And for Pender, it’s not only an academic topic, it’s a very personal one.
When her mother was 32 and she was a year old, her mother found a lump in her breast.
Pender, of course has no memory of it, but her mothers’ 4 sisters filled her in when she was old enough to understand.
“She went to the doctor and because she was only 32, they were sure it would be benign. But, also because it was 1974 biopsies were done under general anesthesia and she went to sleep just thinking she was having a biopsy.” However, during the procedure, pathology revealed that it was cancer.
Pender say, the 70s was the era of what they called the one step procedure. Doctors didn’t have to get her mother’s consent to do a mastectomy. While she was already under anesthesia, they got her husbands’ consent. “She woke up to find that she had had a unilateral mastectomy and that she had breast cancer, so, not an ideal situation.” Pender explains, “She lived for 10 years before she had a recurrence. She didn’t have any adjuvant therapy; no chemo, no radiation, no Tamoxifen, because that had just become available, but not in the rural place where they were. So, 10 or 11 years after that, she had a recurrence. She died when she was 46. I was 14.”
Today, much more is known about the disease and there are many more treatment options –and choices to make. And that’s where things get confusing. Genetic testing can now identify risks for developing breast and other cancers, but what is the definition of risk and what is the meaning of ‘choice.’ She says, “Medicine was, what we call paternalistic, for a very long time. And, my mother’s experience could not illustrate it any better. Patients and women in particular, didn’t always have a lot of choice. Doctors told you what was best.”
She says there have been steps taken to change that in the last 40 years. “You can see it when you go into your physician’s office.” There will often be something like a patients’ ‘Bill of Rights. “Medicine has really embraced this as a corrective to that paternalism, (the fact) that patients get to choose.
Pender said she has “always lived under the shadow of her mother’s early death from breast cancer.” A few years ago, she too, was diagnosed with the disease. She opted for a double mastectomy with breast reconstruction. While she was writing the book, Pender had two streams of thought going, one about her own medical decisions and the other, the main argument she makes in her book, is that the idea of choice is deceptive. She believes the focus should instead be on a different word, care, whatever form that takes for each person.
Sometimes, when she talks with people about her new book, "people will ask me what I think women should do (about a diagnosis or the results of a genetic test.) But, she says, she has no input to give on that question. “All I can tell you is what I did. And I can tell you that I’m happy about my choices.”