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Monopolies and Gene Patents – Think You Own Your Genes? Think Again!

Late last month, the ongoing controversy regarding the legality of gene patenting became even murkier and unfortunately, the situation does not appear closer to resolution.

Why does this matter?

Well, because lives are at stake. And lots of dollars.

Women who test positive for the BRCA 1 or BRCA 2 genetic mutations have a much greater risk of developing breast and ovarian cancers in their lifetimes. Men with these gene mutations also face greater risk for breast cancer and possibly other cancers as well.

Genetic testing for these particular two gene mutations is becoming more and more prevalent, but not less expensive. Insurance companies are watching closely from the side lines.

Here is a very brief synopsis of the situation as I understand it.

In 2009, Myriad Genetics applied for patents on the BRCA 1 and BRCA 2 genes. Shortly thereafter, the American Civil Liberties Union and the Public Patent Foundation filed suit against Myriad, the University of Utah Research Foundation and the U.S. Patent and Trademark Office claiming such patents inhibited a patient’s right to obtain valuable information in regard to hereditary breast and ovarian cancers.

On an important side note, Breast Cancer Action was and is a plaintiff in this lawsuit, the only national breast cancer organization listed as such.

Where are all the others? I’m just asking…

I applaud BCA for taking this bold stance!

In March 2010,  United States District Court Judge Robert Sweet ruled the patents were improperly granted based on the “law of nature” which basically means things in nature are discovered, not invented and therefore cannot be patented.

Myriad appealed to the Department of Justice assuming it would uphold its long standing government position on granting gene patents. To the surprise of many, undoubtedly especially to Myriad, it did not, but instead upheld Judge Sweet’s decision declaring these particular human genes should not be eligible for patents.

You guessed it, more appeals.

On July 29, 2011 a higher U.S. federal appeals court reversed things once again, this time by affirming Myriad’s right to indeed patent the two human genes in question.

The controversy continues.

Proponents of the patent (Myriad and their lawyers, among others) insist Myriad is testing for chemical forms of the genes, not as they appear naturally in the body, so a patent is indeed reasonable. The Biotechnology Industry Organization warned denying such patents has the potential to “undermine U.S. global leadership and investment in the life sciences.”

Those opposing the two gene patents believe such patents interfere with a patient’s right to access information about herself. They maintain the genes are part of nature and are not eligible for patents on moral and ethical grounds.

“Moral and ethical grounds” don’t stand much of a chance in a courtroom I’m afraid.

Steven Salzberg, professor of computer science and genetics at the University of Maryland, says,

“If you want to look at your own genome and see if you have a mutation, you should be able to do that without paying a license fee to someone else.”

I agree.

And this fee is not cheap. The cost for testing the first person in a family is around $3,000. The price for subsequent testing within the same family becomes considerably less expensive, around $400 per person, because the cause of the problem has already been “zeroed in on.” They know exactly what to look for, hence the cheaper price tag.

You might assume I’d be on the side of no patents for human genes and I am. However, as most of you know, I am a supporter of scientific research and I realize potential implications/problems may or may not materialize if patents are denied.

In this case, I do believe a patent is a mistake, and a big one.


If Myriad is allowed to maintain its right to patent these two genes, Myriad remains in control. Myriad would decide if these mutations could be further researched by others. Myriad would decide what tests could be offered to patients. Myriad would decide how much to charge for these tests.

In short, patients seeking genetic information about breast and ovarian cancer would have only one option, Myriad.

And what about the uninsured or the under-insured?

Is it simply sorry, no testing for you?

Is this what our healthcare system has come to?

What if Myriad chose (or was forced) to give up the patent idea and share the knowledge? Just think of all the time and money presently being spent on law suits that could be saved and put to better use on things like, well, more research.

What if Myriad lowered the cost of the tests on the premise that lower costs would mean more people would be tested? Wouldn’t more testing ultimately result in more profits?

Like usual, it comes down to dollars and lots of them.

In my opinion, it’s never good when one entity holds all the cards.

As of now, Myriad’s monopoly continues.

The next few years will undoubtedly see huge advances in genetics.

What kind of precedent do we want to set here, or have we already done so?

Is it too late?

There is a need here for far more intelligent minds than mine to sort this stuff out. I hope they can.

Lives are at stake. And dollars.

Perhaps I’m naively hanging onto the hope that lives are more important than dollars. I sure hope so.


If you would like to DO something regarding this issue, get informed. BCA is offering a free webinar later this month. 

What are your opinions on this issue of patenting human genes?

Have you had (or would you want to have) genetic testing?

What suggestions for action do you have?



Teri Fuller

Monday 15th of August 2011

Dear Nancy,

First off: thank you for clearly and concisely addressing this problem and explaining why the recent decision to uphold the patent is a bad one--for us all.

I am the 10th woman on my mother's side of the family to be diagnosed with BRCA1 breast cancer in the past two decades, and I know how important BRCA testing can be in saving lives (it probably saved mine, in fact.)

I have so many questions: I wonder what this BRCA patent will do to other BRCA research. Why would other researchers want to engage in this topic if Myriad owns it? What does that do to families like mine?

I also have a question: would you be willing to post your article on my blog: Cells Gone Wild? I think my audience would find your contributions significant. Maybe you could be a guest blogger and compose a short preface, perhaps?

Thx! Teri :)


Tuesday 16th of August 2011

Teri, I'm sorry you lost your mom when you were so young, plus all those other cases in your family, that's really difficult to deal with. There are many unanswered questions surrounding this whole gene patenting issue. The ramifications will be felt for years and will affect other yet unknow genes. Sure, I would love to have my article posted on your site. "Cells Gone Wild," that's quite the name! I'll be checking it out and contacting you soon. Thanks for commenting on this important issue, Teri.

Rachel Pappas

Friday 12th of August 2011

Good reporting and good writing Nancy. I wish I could say it's unbelievable what the medical and medical-related industries get away with, but sadly, none of it surprises me anymore. Thank you for keeping this stuff in front of us. Maybe, maybe one day it'll change.

For positive news on BRCA and other hereditary cancers (at least in that there are things you can do for yourself), please visit my site and check out "Might you have a hereditary cancer: what you can do about it" (parts 1 and 2). The blogs are about four articles down.



Friday 12th of August 2011

Rachel, Thank you for your comments. Sometimes it does all get distressing doesn't it? Thanks for letting readers know about your site.

Monopolies and Gene Patents – Think You Own Your Genes? Think Again! | Breast Cancer Action

Wednesday 10th of August 2011

[...] Nancy Stordahl, a BCAction member and breast cancer activist. She blogs at Nancy’s Point and this post was originally published [...]

Caitlin Carmody

Wednesday 10th of August 2011

Nancy, thank you for covering this important topic. As you said, Breast Cancer Action has been a plaintiff in this lawsuit from the beginning because we believe gene patenting is bad for women's health. If people are looking for more info, this is a helpful overview that complements Nancy's great commentary:


Wednesday 10th of August 2011

Caitlin, Thank you for your comments. You're absolutely right, gene patenting is bad for women's health. I actually think it's bad for everyone's health, if not now, in the future. Thanks for the link. I checked it out and agree it's a helpful overview. Thanks again for the work BCA does concerning this issue!

Tuesday 9th of August 2011

Nancy, I'm with you, thinking that lowered genetic testing prices would mean more women and families would get tested and therefore, Myriad would make more money. One of the problems may come with the fact that only about 10% of breast cancers are BRCA positive. Granted, 10% of new breast cancer women who are tested would be a huge revenue generator for Myriad at even $1,000 a test. I'm afraid it is that money trumps lives. Terrible, isn't it?

XOXOXO, Brenda


Wednesday 10th of August 2011

Brenda, I agree with you that one of the problems is that only abou 10% of bc cases are linked to brca, but I feel like this issue is an issue that will explode in the near futrue as we learn more and more about genetic links to all kinds of things. What we do now matters. Sadly, I think you might be right about money trumping everything. Thanks for your comments, Brenda.

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