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BRCA1 & 2 Gene Patents, A Landmark Case & A Rally at the Supreme Court

Have you ever wanted to be some place, but you couldn’t be there for whatever reason?

Who hasn’t, right?

That’s how I’m feeling right about now.

Where do I want to be?

Breast Cancer Action is sponsoring a rally on the steps of the Supreme Court on Monday, April 15, 2013. I want to be there in person. I wish my voice could be part of the larger chorus there where others will be speaking out from those steps, but unfortunately, it’s not possible for me to attend.

My voice will have to be more like a quiet echo from here.

Is anyone listening?

I hope so because much is at stake here for us all.

On Monday, April 15, 2013, the U.S. Supreme Court will begin hearing oral arguments in a landmark case challenging Myriad Genetics’ patents on the “breast cancer genes.” A decision will perhaps come later this summer or fall.

The reason for this rally is to draw attention to this important issue.

This case matters to everyone.

I don’t wish to repeat myself, so you can read my latest articles covering the specifics a bit more here or here.

Okay, I’ll repeat myself just a bit because who clicks on all those links in a blog post, right?

Here are a few reasons why Myriad’s monopoly on gene patents is a bad idea:

  • Myriad retains exclusive rights to all testing and research on BRCA1 and 2 genes. This means sharing of data and analysis is blocked, undermining further collaborative scientific research efforts.
  • Myriad can keep testing costs high indefinitely. (And they have)
  • Second opinions are impossible.
  • The patents mean continued limited access/information for underserved populations.
  • This monopoly creates a barrier standing in the way of further breast and ovarian cancer research.
  • The idea that a human gene can be patented is flawed, sets a dangerous precedent and is just plain wrong.

This landmark case will not just impact those like me who carry the BRCA1 or 2 gene mutations, but all of us.

Why? (Click on this one for some good answers)

There’s a precedent to set or break here.

The argument basically comes down to one question, should human genes be patented?

The plaintiffs’ side says no. The opposing side (Myriad) says without patents there is no incentive for innovation.

A few other questions might be:

Should profits come before patients’ rights?

Is patenting human genes undermining advancement of personalized medicine?

And finally, is the future of personal healthcare for us all at stake here?

Again, I know I keep saying it, but this is a landmark case that affects my family directly today and some day soon might affect yours as well.

I’m hoping the Supreme Court sets things right.

What about you?

If you’d like to be part of the “echo”, read this for things you can do.

Have you ever attended a rally of any kind?

Do have an opinion on this particular case?






19 thoughts to “BRCA1 & 2 Gene Patents, A Landmark Case & A Rally at the Supreme Court”

  1. Nancy, i too want to be at the rally to outlaw patenting on genes. Why would I want to be at the US supreme court when i am not American? I live in Israel. Here 1 in every 40 people have a BRCA genetic mutation. No one can afforf the Myriad test as its the equivalent of 3 average months pay. We do a test of 3 mutations but there are over 3000. So a negative result is an illusion. This illusion is leading to wrong treatment and is causing death. Young women are dying, leaving children motherless because of the patent MYRIAD holds on the BRCA gene. So please be there for all the high risk community in Israel too – this is a Global issue!

    1. Lisa, Thank you so much for commenting. You’re so right, this is a global issue. Myriad’s patents affect many many families around the world. That’s why this is indeed a landmark case that will impact many now and in the future.

  2. I wish I could be there too! The Supreme Court’s ruling will be enforced for generations to come! Your post makes the issue easy to understand. I hope at least one of the justices reads your post and stands up for human rights!

  3. Nancy,
    I have been following this case as well and wish I could be at the rally in DC on Monday, but I know that many will be there as a voice for all of us. I applaud Breast Cancer Action and the others involved in this case, and I applaud you for another well-written post. Thanks!

    1. Lisa, I’m so glad to hear you’ve been following this case. Thank you! There are other influential advocacy organizations involved as well, such as FORCE, but yes, BCAction gets special praise for being a plaintiff from the start. Thanks for sharing your thoughts, Lisa.

  4. Thanks for all of your hard work in spreading the word! If enough people rally together we CAN make a difference. This gene patent lunacy affects so many of us… far & wide. Public opinion has been making a difference. Never give up!

    1. Teri, Thanks so much. You’ve done an awful lot yourself – much more than I have, Teri. I do hope you’re right about public opinion making a difference here. Thanks so much for taking time to leave a comment.

  5. Nancy.. could you please share all those bullet points on Fb & pinterest? I’d love to share those reasons..front & center..

  6. Nancy this case is so important and you have explained the reasons why, so well. I too wish I could be on the steps of the Supreme Court with Breast Cancer Action and I am going to follow and report everything I can about this globally important issue. Myriad has some very high powered patent attorneys (I met one-another story for another day!), and just because they have so much money backing them, this patent should not be allowed. Thank you for writing all these important issues about this case.

    1. Susan, Thank you very much for adding your thoughts to this discussion. And thank you for saying you will follow and report on whatever unfolds.

    1. Michael. Thank you for sharing your link. Your in-depth article is excellent. And thanks for including a few of my words in your post. Much appreciated!

  7. Nancy, I also wish to outlaw the patenting of genes. This issue gets me so mad because genes just shouldn’t be patented. ARGHH. I’m with you and Breast Cancer Action and so many people on this one.

    I, too, wish I could’ve gone to the rally. It’s really difficult for me to go anywhere for some length of time without Ari.

    You have made your voice heard — loud and clear. Thank you for this.

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