Monday, May 24, 2010

Thoughts on Privacy

I've been thinking a lot lately about privacy. And I know I'm not alone. Unless you've been living under a rock -- or just quietly going about your life offline -- you've undoubtedly read about the dust-up created by our robot overlords, er, ahem, I mean Facebook, and their new opt-out-only privacy settings and the cash they're printing selling our personal data -- the things we like and don't like -- to companies who in turn target us with personalized advertisements. The problem with Facebook, so far as I see it, is that we all flocked to it -- after we abandoned the rusting amusement parks of Friendster and MySpace -- because we thought it was a place to share photos and catch up with old friends; we gave freely of our personal data -- joined groups, supported causes, etc -- because we were told our profiles would be protected. But the reality is much more complicated; now our profiles are being commodified and, most troublingly for me, much of our data is now Google-able.

I Googled myself today, and I discovered, much to my horror, a wall post I'd written on a group I belong to on Facebook, which contained a link to this blog, was the second result that appeared when I typed in my name. Now, I'm not so vain as to think that every day, dozens of ex-boyfriends, frenemies, potential employers, and secret admirers, etc are typing my very-hard-to-spell last name into Google and reading through the results. But I'm also not naive enough to think that people don't Google me, especially potential students, editors for whom I freelance, and, yes, potential future employers. And though I am proud of this blog and proud of the decision I made to take control of my health, I do not want the fact I had a double mastectomy and am a breast cancer gene carrier to be the second thing you see when you Google me. Yes, being a BRCA mutant and a card carrying member of the double mastectomy ladies luncheon society is part of who I am; but it's not what I want to define me.

When I saw the search results, I broke out in a cold sweat. I felt outted. I felt naked. And the worst part -- I feel powerless. There's no one to write to to say, "Kind sir, please delete this search result. I'd rather people not know about my boobs." I'm not sure when this happened. I googled myself a few weeks ago and nothing of the sort showed up. So I changed my settings, left a few groups, and well... I can't do much else.

Which leads me to larger, icky, existential questions about how to live in an era of oversharing, still maintain this blog (because I truly believe if I can help just one woman feel less alone and less scared, I've done something right), and preserve a modicum of my privacy. I realize it's a slippery slope; if I was truly interested in privacy, I would never have penned this blog or dreamed of telling my story more publicly. But I did those things on my terms; Facebook outted me on theirs. I'm feeling exposed and vulnerable and, regrettably, let down.

The truth is, the public at large is misinformed about BRCA mutants. As I wrote about in my last post, people can be unkind, judgmental, and, frankly, totally wackadoo in their perceptions and prescriptions. Because I'm not a breast cancer survivor, for whatever reason, my choice to prevent cancer by surgically removing the parts of my body most likely to try to kill me is deemed controversial by some, over-dramatic by others, and, at the very least, questionable by many. And I hate that this information about me -- this choice I made, this journey I've traveled, this genetic imperfection I have -- is now accessible to people who may judge me because of it. I've always thought of this blog as a place to update my friends and family as well as a place to connect to complete strangers; I've never intended this to be a destination for acquaintances, people I know but not well enough to tell them about all of this. And that's who that Google result make me accessible to: the people I don't really care to share this with.

When I first started writing here, I found myself questioning whether writing about my heath -- something so private that there are laws protecting the information I've giving away here for the world to see -- would end up harming me -- in terms of discrimination and judgment. I'd forgotten about that concern in the last few months; after all, I was reaching so many people, and telling my story was therapeutic for me. This blog, this forum, was not harming me at all; it was helping me, as well as others. But now I worry about my privacy again and wonder when the balance tips between help and harm.


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  2. This is an important message to get out, thanks for writing about it. About a week ago, I went through my Facebook profile and deleted a lot of information because I have lost trust in them.

    I understand your dismay at seeing your Google results too. I've thought a lot about how public I want to be about BRCA in my family. I try to keep my blog anonymous, but I still worry that I might slip up. On the other hand, it's really useful to have a space to talk freely and connect with others in a similar situation because I am not public about my BRCA risk in my real life. Only my family knows, and I plan to keep it that way for quite a while. There's even some people in the family I avoid talking with because I don't want to have to cope with their reactions. Don't even mention friends and employers. I can't imagine how I could get them to respect me for confronting this challenge in my life without also thinking that I am "cursed."

  3. After reading this I did a google search of my own name, page after page came up - I really don't mind being associated with BRCA things, but I did find it weird that even where I'd made donations here and there - that showed up in google searches. Doesn't seem like it should/would, but it does.

    Some people who've had the same concerns about privacy on facebook have created separate profiles with pseudonyms so they can talk freely in BRCA groups without everyone knowing their business. Seems to work for some. I think I'm too deep in to even consider that at this point.

    Good luck with deciding how you want to handle it, I know it's not always easy..