It all began tonight with an NPR article about Huntington’s disease. Charles Sabine, a famous journalist, had a family history of HD and decided to undergo genetic testing. The test revealed that he will inevitably die from the genetic mutation and its horrific outcome. I continued reading and was brought to tears about how he and his wife decided to conceive “anyway”. They decided to have their 17-month-old daughter tested as well, and – thankfully – discovered that she does not have the mutation.
This all got me thinking about the courses that I’ve taken in which genetic testing, and the bioethics that come along with it, came up. I always enjoyed the debates and controversy over it all. I thought, “Hey, that’s interesting- these people have a chance to know their fate, in a way. They should take advantage of recent scientific advances and get that figured out right away!” I began thinking again about selective abortion in cases such as Down’s syndrome, in which a pregnant woman can know with certainty that her child will have the disorder.
It all got worse, however, when the topic hit Home.
I suddenly heard the familiar voices of family members wagging their fingers and advising me to get genetic testing. You see, I have a pretty long list to check off when it comes to my family health history. When I visit a medical office for the first time, it’s not the burden of the time that it takes to fill out the forms, nor the shame that accompanies answering such intrusive questions for complete strangers to read, that bothers me. It’s the worry that overcomes me when glancing at my chart once it’s filled out! I’ve got a history of it all: diabetes, heart disease, epilepsy, brain aneurysm, stroke, AND breast cancer (there’s probably even more).
My mother is a breast cancer survivor and, ironically, an ex- mammogram technician. When I was in high school and she was only about 40 years old, my Mom underwent radiation therapy and a double mastectomy. Now, I won’t get into the trauma that our family incurred as a result; there are countless similar stories on the Internet for you to sob through. The point is that it has left me terrified of cancer and the fact that I am at elevated risk.
Anyway, my habitual glance at the front page of NPR led to a tidal wave of emotion and a frantic series of google queries. Back at age 20, I asked my doctor when I could get my earliest mammogram, considering my family history. Two women staffers debated about it, and eventually declared “35” an appropriate age. Shit, I felt like I deserved one right then and there….
[TO BE CONTINUED]