I recently underwent a DNA test to determine my genetic risk for a number of different diseases. I did this because I wanted to know, for myself. I don’t have children so there’s no risk of passing it to them. I just simply wanted to alleviate some fears and possibly backup theories regarding my health that I and my doctors already have regarding certain risks. I’ll be sharing more about the genetic testing next week.
As I thought about what I might want to share today this whole genetic thing was on my mind. The question of is there a genetic link for Fibromyalgia or Endometriosis (things that my genetic test didn’t test for because, as far as I know they’ve not found that gene yet). There are studies that indicate that there probably is a genetic link for Fibromyalgia, but all they can base it on is that someone is 8.5x more likely to have Fibro if someone in their family has it. Another study looking at the health of twins found that identical twins are more likely to both suffer from chronic pain than fraternal twins (indicating that is is genetics not just environment that leads to that increased risk).
As I looked at different studies on genetic risk one that caught my eye was not a medical study but a sociological study. This 1999 study examined the experiences of women who have undergone genetic counseling for breast and ovarian cancer. What they found was that most women who choose to go through this counseling and have the genetic tests run do so because they feel they have a responsibility to do so.
This responsibility is not just to know their risk for themselves, but somehow they have a responsibility to everyone in their family (past, present, and future) to know their risks and mitigate it. Basically, they don’t feel they even have a choice NOT to know their risk.Do you have a responsibility to know your genetic risks for illness? A responsibility to who? Click To Tweet
I found that really interesting, largely because I don’t feel that way. I don’t feel responsible for anyone but myself. I already felt that I needed to do what I could to mitigate any risks, through regular doctor visits and paying attention to my health. For me this responsibility comes from watching my mom go through cancer years ago. She ignored symptoms to the point that by the time she reached the hospital she could have bled to death. Watching that taught me how important it is to pay attention to my health.
One big point this study made was that DNA tests can have false positives. Simply, just because you have a mutation doesn’t mean you’ll get the disease. In the case of DNA screening for breast and ovarian cancer this can lead to a woman choosing to unnecessarily remove her breasts and/or ovaries. These surgeries carry risks of their own and can lead to further risks.
This isn’t something I’d given much thought to. Even if I had tested positive for the mutations that increased my risk to 85% for breast or ovarian cancer I’m not sure what I would do. In the case of ovarian I’ve already considered a hysterectomy just to reduce the risk of endometriosis returning. So, yes an increased risk of ovarian cancer would probably push me over the edge there. However, knowing that I have an increased risk of breast cancer would probably not push me to have a mastectomy; instead it would push me to better pay attention to my breast health through self exams and regular mammograms. But, then who knows what I’d do, because I’m not in that situation.