Every once in a while, there is a news story related to health that I feel compelled to talk about. Angelina Jolie’s op-ed in the New York Times about undergoing a prophylactic mastectomy, My Medical Choice, is one of them.
(It really is a must-read if you haven’t read it yet).
I had to write about her. I have heard many examples of this over the last few years, but this is the biggest, most visible example.
Women in the 1960s burned their bras. Maybe ours is the generation who cuts off our breasts – we don’t need them and they’re killing us?
There are a variety of issues I find with Jolie’s case. I’ll briefly mention them, even though I don’t want that to be the focus of this post. She’s a celebrity, therefore she has money and resources that many women don’t have access to. Not only is genetic testing expensive, so is the surgery, which may not be covered by insurance. She makes the mastectomy sound minor. Maybe it’s because she wasn’t going through cancer treatment at the same time, but it seems to me that she is minimizing the procedure. She also had reconstruction done almost right away, whereas many women have to wait years to do it.
Another issue is that discrimination based on the results of genetic testing is a significant concern (Klitzman 2011) – potentially not in Jolie’s case because she is so visible, but for the general population– especially in the areas of insurance and employment (Penziner, et al. 2008).
Since I have not been directly genetically impacted by breast cancer (a non-blood aunt had it, but – knock on wood – my immediate family has not been impacted by it), I don’t want that to be the focus of this post.
I want to talk about genetic testing in general, and what it would look like for lupus and rheumatoid arthritis, in particular.
I recently wrote an article for HealthCentral about my sister’s risk of lupus and RA. In that article, Hoping My Sister and I Share Everything But My Illnesses, I talk about the dilemmas that come with having a disease that most likely has some genetic component to it, and what this means for immediate family members.
My sister is 18. She, as of now, has no symptoms or medical conditions that would suggest that she may have lupus or RA. As of yet, there are no medical tests that will give definitive answers about predisposition to lupus and RA, as there are for conditions like Breast Cancer and Huntington’s Disease. But she could potentially undergo diagnostic tests to see if she has a positive ANA, elevated Rheumatoid Factor and Sedimentation Rate, etc., which could point to having the disease, but not yet being symptomatic.
But what would this do for her? And what would it do to me?
As I said in the HealthCentral post, she was very young, just 13, when I first got seriously sick five years ago. While she knows what illnesses I have, and generally how I feel, I haven’t gone into detail with her about the litany of symptoms and problems that lupus and RA can create. Every time she is tired, or has an ache or a pain, I don’t want her to automatically assume that she has lupus or RA.
I personally think, since she is young and healthy, that it is needless to make her worry about something that likely may never be an issue for her.
But the era of genetic testing has opened up a brave, new world.
The availability of genetic tests is growing by the day. There are currently around 1,000 tests available. This means that we are faced more and more with decisions regarding our bodies and their future viability.
We can learn more about ourselves and our bodies than ever before. But what do we do with that information? Do we wield it for good or evil or a combination of the two?
In this case, what you don’t know can hurt you. However, what you can find out can hurt you both physically and emotionally.
For instance, if someone has a parent with Huntington’s Disease, they might get the disease, but they also may never get it (to be precise, a child has a 50% chance of getting Huntington’s Disease if they have one parent who is affected by the disease). So how do you live with that information?
Maybe if you have a plan: If I test positive, I’m going to do X. But if you get that information and you don’t have a plan, then what?
We all have choices to make, both those who are already chronically ill and those who are not yet sick.
For Angelina Jolie, because she was found to carry the BRCA1 mutation, it was determined that her risk for developing breast cancer is 87%, and 50% for ovarian cancer. For her, odds that were just too great.
Some of the positives of getting genetic testing are that the results might make you less worried about getting a disease, and that you can change your lifestyle and try to minimize your risk of getting a disease (FamilyDoctor.Org 2010). In Jolie’s case, that meant having a prophylactic mastectomy to decrease her risk of breast cancer from 87% to under 5%.
Some negatives of genetic testing are that the results might make you more worried, and they might cause stress and guilt, and could cause family problems, and could lead to discrimination (FamilyDoctor.Org 2010). In the case of Huntington’s Disease, those who undergo predictive testing have been found to have an increased risk of suicide (Robins Wahlin 2007).
This issue is not clear cut. And it is a personal choice; both whether you choose to get the information provided by genetic testing at all, and what you do once you have that information.
Since this is a personal choice, and should be respected as such, just as people have the right to know, they have the right not to know, as well (Bortolotti and Widdows 2011).
Ignorance may not be bliss, but for some people, it is more worth it to go about their lives without being constantly worried. For others, getting tested might provide peace of mind.
I think Angelina Jolie made a brave choice. I commend her for opening up about her journey. She picked hopefully having the years her mother didn’t have over keeping a part of her body that could potentially kill her. She is not the first, nor will she be the last woman, to make this choice. I know there are women out there who think a prophylactic mastectomy is too extreme.
And I am not sure what I would do if I were in that position, about testing and what comes after. Just as I am not sure what I would do if the landscape of genetic testing looked different.
If there were genetic tests available to predict the onset of lupus and RA, or even other autoimmune diseases, would I urge my sister to get tested? Ultimately, it would be her decision. It’s her body and her choice. That might sound cliché, but that’s the reality of the situation.
And that is something we cannot lose sight of. Just because we have medical technology available, do we have to use it? Should we be offering predictive testing for diseases for which there is no cure? Or do we offer hope to those who feel empowered by having that information?
Bortolotti, Lisa, and Heather Widdows. 2011. “The Right Not to Know: The Case of Psychiatric Disorders.” Journal of Medical Ethics 37 (11): 673-676.
FamilyDoctor.Org. 2010. “Genetic Testing: What You Should Know.” <http://familydoctor.org/familydoctor/en/prevention-wellness/staying-healthy/healthy-living/genetic-testing-what-you-should-know.html>
Klitzman, Robert. 2010. “Views of Discrimination among Individuals Confronting Genetic Disease.” Journal of Genetic Counseling 19 (1): 68-83.
Penziner, Elizabeth, Janet K. Williams, Cheryl Erwin, Yvonne Bombard, Anne Wallis, Leigh J. Beglinger, Michael R. Hayden, and Jane S. Paulsen. 2008. “Perceptions of Discrimination Among Persons who Have Undergone Predictive Testing for Huntington’s Disease.” American Journal of Medical Genetics B Neuropsychiatric Genetics 147 (3):320-325.
Robins Wahlin, Tarja-Brita. 2007. “To Know or Not to Know: A Review of Behaviour and Suicidal Ideation in Preclinical Huntington’s Disease.” Patient Education & Counseling 65 (3): 279-287.