BRCA Genes: Facebook and Organ Donation

Facebook. Time-sucking guilty pleasure or making the planet Earth a better place? No matter how you view social media, chances are it is part of your existence. Been a Facebook junkie myself since 2008 and have enjoyed connecting with old friends, colleagues, relations seldom seen and playing stupid games. In yet another way it has entered day-to-day life, Facebook has added a spot that allows users to indicate whether they are organ donors. For the first time since discovering I carry a defective BRCA1 gene, it occurred to me that perhaps organ donation was no longer possible. Do people with a genetic pre-disposition for cancer and/or a history of cancer qualify to be organ donors?

Turns out the answer is maybe. Or maybe not.

 According to the U.S. Department of Health and Human Services web site on organ donation, there are few medical conditions that will completely exclude a donor from consideration. These include HIV, active cancer and systemic infections. Organs have to be evaluated at the time of death for suitability. There’s no way to know until after I’ve croaked whether any of my body parts might help someone else, so I’m going to leave that box on my driver’s license checked. The one that says I am an organ donor. The question of whether to share that with all my Facebook BFF’s is another matter.

Do you want the entire world to have access to your life’s details? That is what I ask myself every time I post on Facebook. I assume that no amount of tinkering with my Facebook privacy settings will protect me. My life is an open book, but often I choose not to share certain aspects with everyone. There is such a thing as too much information. While I laud Facebook for recognizing that social media might be a tool for increasing the number of people who are organ donors, I wonder whether this starts to head into the category of “oversharing.”

I looked at the “Health and Wellness” section on my Facebook timeline for the first time today. Under the Life Events link I found the Health and Wellness tab. It has all kinds of crazy categories including a “Broken Bones” section. Does anyone really want to know that I broke a finger thirty-five years ago picking up a volleyball that was rolling on the ground? I think not. Of the eight sections in the Health and Wellness area, the Organ Donor choice now tops the list. Right below Organ Donor is a section titled “Overcame an Illness.” Is this where I am supposed to post my BRCA status, add a few photos of my Frankenboobs or gush about a clean pathology report?

For now, Facebook is where I like to post photos of my spoiled housecats and their lives. Visit them at http://www.facebook.com/home.php?#!/pages/Cotty-Lord-Cotswold-the-Handsome/135804939796577

Please be sure to like them.

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4 comments on “BRCA Genes: Facebook and Organ Donation

  1. tawnia says:

    “Frankenboobs” LOL … so true, only I thought I was the only person to call them that. 🙂 I also, the term “bi-lateral mastectomy” makes me uncomfortable for whatever reason so, in casual conversation, I refer to having had my boobs chopped off. You can imagine the response of a newly minted listener 😉

    • Lee Asbell says:

      A good sense of humor really helps!

      • tawnia says:

        You are my BRCA1 hero. I’m learning courage to speak out about this through your writings. After profolactic removal of female parts I am an IT. That really goes against my female grain… Thank you for writing. I was reading the firefly article tonight and my 20 yr old daughter who I thot was sleeping heard me sob. It was a story telling of yours after that.

      • Lee Asbell says:

        Tawnia – You are NOT an “it.” What makes us women is not our parts. But I do understand how tough it is to deal with this big stinking pile of BRCA1 crap. Some days just suck dog weenies! If I’ve helped you in some small way, that is awesome. That firefly story from Sue F. was superb writing. She is one of my heroes.

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