I had my genetic counselling appointment today… and I didn’t get tested.

I have to admit I was a little shocked at myself. For weeks, all I have been thinking about is getting tested to see if I have the BRCA2 mutation that my mother carries. I have wrote several posts on this post extolling the importance of testing and why I want to do it. So why on earth did I not ask to sign the consent form today?

Well, after taking some time to think through things these last couple weeks, I realized that there really is a significant reason why I might not want to get tested right now: genetic discrimination. And in particular, I am concerned about what impact this information could have on my potential immigration application to Canada. I have been thinking about immigrating to Canada for some time. Ever since I met my girlfriend ten years ago. At that time, I was living in the States and she was in Hong Kong. And there was no practical way that she could come to the U.S. because U.S. immigration law doesn’t recognize same-sex couples. (Well, not for American citizens at least. Funnily enough, if you are not an American citizen and have a valid work visa in the U.S., you can sponsor your same-sex partner. Always nice to know that your own country gives more rights to non-citizens than yourself.) So I went to Hong Kong. Hong Kong has a much easier visa and immigration system to work with so it was really quite easy for me to go there. But there was still no legal protections for my girlfriend and I there. I often went into long spiels with my girlfriend about the importance of legal protections and how we should find a place where we can live in place where we have equal rights (which she found very boring). But I really didn’t have to convince her to move, because she has always dreamt of going to school overseas anyways. So we have ended up in Canada. And we’re testing out this new life of equal rights… almost. I never expected when I arrived in Canada that I would end up worrying genetic discrimination, but here I am.

My genetic counsellor admitted that she didn’t know about the impact of genetic testing on Canadian immigration laws. So she is going to do some research for me and get back to me. Meanwhile, I have held off on genetic testing.

Actually, I am through a whole new round of emotions surrounding BRCA. After finding that I have significant personal reservations about doing some risk-reducing surgeries like oophorectomy, I have begun to wonder if I would really consider doing a mastectomy either. I have imagined the scenario of testing positive and not doing any preventive surgeries, only surveillance. “Waiting for cancer” some might say. Isn’t it a crazy idea? Part of me feels it isn’t.

I can’t fully explain my new feelings yet. And I am not saying that I making up my mind on anything. I am just thinking about things from a different perspective than before. Maybe it’s easier to understand if I share some questions that I am thinking about: What battles for survival are worth fighting for? What makes me think that I am entitled to the equal chance of living as long as the other person? How much, really, should I fear cancer?


3 Responses to “Discrimination”

  1. U.S. policy towards same sex relationships is illogical and incomprehensible; I’m so sorry that you have to deal with that kind of bs. Immigration sounds like a really logical reason to wait; I hope your genetic counselor finds out information for you, and hopefully information that indicates non-discrimination in immigration towards those with genetic conditions. I wonder, if your girlfriend decides to apply for permanent residency or citizenship, and you are her domestic partner, would discrimination due to BRCA status still remain an issue? (I don’t know anything about Canada’s immigration or domestic partner laws, and you have likely thought of this before, but I just thought I’d throw that out there.)

    I waited a few months to test because GINA still had not passed congress when I first saw a genetic counselor, and I also bought life insurance before testing. I wanted to cover all my bases. I think making sure that your genetic status is not going to get in your way is important.

    I have imagined the scenario of testing positive and not doing any preventive surgeries, only surveillance. “Waiting for cancer” some might say. Isn’t it a crazy idea? Part of me feels it isn’t.

    That was my plan when I first tested, and that’s still what I’m doing now. I will probably have surgery in the next several years (although I’ve been starting to feel a weird urgency with the breast thing over the past few weeks or so, but we’ll see), but I never planned on having anything done right away. Here’s the thing: my BSEs have been fine, and my recent clinical breast exam was fine. I’m going into my mammogram this Thursday knowing that I probably don’t have breast cancer. HOWEVER, IF they find cancer, it would be detected much earlier than it would have been detected with just a BSE or clinical breast exam, and I would thus have a much greater chance of survival. That make surveillance a decidedly proactive step.

    Also, when my father tested positive, I was told that since there was a 50% chance I carried the gene, the assumption would be that I had it unless I tested negative and I would thus be recommended for all of the screenings through which high-risk women go (one of the big reasons I tested was because I didn’t want to have to go through all of that if I did not have a mutation). Obviously I don’t know what the situation is in Canada, but you might be able to push for screenings now if you don’t feel you can get tested but are still worried.

  2. My friend Eden Spodek went through the testing and several preventative procedures. You might be interested in her story:

    Wishing you good health and much happiness,

  3. 3 KF

    This is a very interesting post. I would really like to know more about genetic discrimination and immigration. I previously only thought of genetics and immigration in terms of familial testing to bring people over. Really looking forward to an update on this issue.

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