Who Owns Our Genes?

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Such was the case heard at the Supreme Court this morning. I was honored to be asked to speak by rally organizer Breast Cancer Action. My remarks are here:

Good morning and thank you for being here! My name is Lori and I have breast cancer.

·      I am here today, to stand arm-in-arm with my BRCA sisters because we are all in this together.

·      I am here today as a metastatic patient and because every day for the rest of my life, I will live with this disease. I need every viable avenue of research uncovered, because if I live long enough, each treatment will probably stop working for me.

·      I am here today because we must stop trying to turn America PINK; and instead unite our focus on research, not ribbons.

·      I am here today because 40% of the human genome is ALREADY patented, denying information about our bodies and preventing cures.

·      I am here today because stumbling blocks on the path to a cure must, MUST be removed.

·      I am here today because lives on are the line.

·       I am here,  perhaps most importantly, because I am the mother of a sweet, smart, wonderful 14-year old son who deserves to have his mother see him dressed for his first date, help him choose a corsage for prom,  watch him graduate from college. He deserves to see my smiling through my tears on his wedding day. And breast cancer is slowly taking me away from him…

Today’s Supreme Court hearing will impact our ability to understand our cancer risk, as well as that of our mothers and sisters and daughters. It will determine our ability to make informed decisions based on reliable information. It will determine the path to new interventions.

Today’s hearing is about that, and about Myriad’s profits.

As it stands right now, not even my own doctor can examine my genes, and scientists can’t study them, so that Myriad can make money.

Because patents are about money – about the right of an individual or company to receive time-limited profit from their ideas and their efforts to bring them to the market place. Patents exist to spur expensive research and innovation. But when it comes to blocking access to our genes, patents do the opposite.

Gene patents block channels of research and restrict innovation. The BRCA gene patents exist at our expense so that Myriad can profit.

·      Does Myriad care that their test is too expensive for so many of us? NO

·      Does Myriad care that there are errors in their test – both false negatives AND false positives? NO

·      Does Myraid care that there is no verification test? NO

·      Does Myraid care that their test is outdated; that the science has passed them by? NO

Unlike most of the scientific community, where global sharing of pertinent understandings that can benefit the common good is prevalent, Myriad chooses to hide their BRCA discoveries, hoarding information that impacts our lives.

What else might be hidden in the gene code that Myriad controls?

·      Information for others who have strong family histories of breast cancer and are testing BRCA negative?

·      Additional help for us as we decide whether to amputate our breasts and remove our ovaries in hopes of saving our lives?

·      Information about other diseases and disorders?

And…if Myriad controls our genes, perhaps they should be held accountable when these genes mutate and malfunction. But of course that won’t happen…

I grew up in the early days of the feminist classic Our Bodies, Ourselves. I was taught that my body was MINE, that •I• made decisions about it. But with the emerging prevalence of gene patenting that is no longer true.

You can’t patent Laws of Nature. You can’t patent the wind, though you can a turbine; you can’t patent the sun, only solar panels. Are not our bodies the result of Laws of Nature as well? If not, then why stop at genes? Next it will be a blood, our organs…

We know the idea is preposterous. And we know that today is that day things can change, that this error can be righted, that justice can prevail, that his wrong can be righted.

Thank you for your passion, for being here, for standing together with us.

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30 Comments (+add yours?)

  1. Susan
    Apr 15, 2013 @ 11:59:14

    Excellent job Lori. I am so glad you were chosen to speak. XoXoXo – Susan

    Reply

  2. Nancy's Point
    Apr 15, 2013 @ 12:03:55

    Your remarks were/are perfect. Thank you so much for being there, Lori, and for speaking out about this landmark case.

    Reply

  3. bethgainer
    Apr 15, 2013 @ 12:06:51

    Wow. This made me cry, and I’m so very proud of you for delivering this eloquent statement. Powerful. Even though I couldn’t go to the rally, I’m there in spirit. Thank you for sharing this.

    Reply

  4. Ginny Haynes Knackmuhs
    Apr 15, 2013 @ 14:16:51

    Powerful speech, Lori. This is an issue that everyone should be concerned with, but thank you, in particular for representing the metastatic breast cancer community so well.

    Reply

    • Lori
      Apr 18, 2013 @ 11:22:50

      Thank you Ginny. While the breast cancer community is easily riled up, this IS important to ALL of us. These are just TWO genes…

      Reply

  5. NotDownOrOut
    Apr 15, 2013 @ 15:24:57

    Bravissima!

    Reply

  6. The Savvy Sister
    Apr 15, 2013 @ 19:37:22

    Great job!

    Reply

  7. Debbie
    Apr 16, 2013 @ 07:24:32

    Excellent, powerful speech Lori! Thank you for sharing it and making your voice heard on this important issue.

    Reply

  8. jbaird
    Apr 16, 2013 @ 16:18:57

    Powerful, Lori. Thank you so much!

    Reply

  9. AnneMarie
    Apr 16, 2013 @ 17:34:53

    How did I Miss This???? BEAUTIFUL. So sorry I wasn’t at your side to hear your strong and powerful voice. So grateful your voice is so strong and powerful.

    LOVE YOU.

    Reply

  10. Dr. Michael Wosnick
    Apr 16, 2013 @ 21:05:09

    Very well done. Your readers may be interested in a blog post I did on this same subject on Sunday night:

    http://www.michaelwosnick.com/patent-my-jeans-not-my-genes/

    Reply

    • AnneMarie
      Apr 17, 2013 @ 08:27:26

      I read this piece and it is FILLED with tons of excellent and insightful information. Thank you!!

      Reply

      • Dr. Michael Wosnick
        Apr 17, 2013 @ 08:46:37

        Thank you so much AnneMarie for the kind words. Coming from you, that is an honour. Please feel free to share further with your own networks etc if you think that is helpful.

    • Lori
      Apr 18, 2013 @ 11:28:04

      Thank you SO for sharing your insightful piece! Very important work and urge everyone to read it! (P.S. Entirely accessible to the lay person, too!)

      Reply

      • Dr. Michael Wosnick
        Apr 18, 2013 @ 11:34:16

        I appreciate the endorsement of it being accessible to the non-scientist ( I prefer that term to “lay person” – we are ALL lay people about many things!) That is the number one goal of my whole website so it’s good to know if I am hitting that mark or not! 🙂

      • Lori
        Apr 18, 2013 @ 11:39:43

        You scored! And the efforts are both important and much appreciated.

  11. DrAttai
    Apr 16, 2013 @ 21:22:05

    Incredible, powerful, and beautiful. Just like you! Thank you for doing this.

    Reply

  12. Anonymous
    Apr 16, 2013 @ 21:33:53

    wow. powerful. intense. thank you for sharing. the range of emotions i felt reading your words was extreme – anger, pride, sadness, disbelief, etc. you are amazing. love you!

    Reply

  13. The Accidental Amazon
    Apr 16, 2013 @ 21:44:29

    Brilliant & moving, Lori. So proud & grateful that you could be there to speak for us all. I hope they really heard you. Huge hug.

    Reply

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