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Video: Should cancer genes be patented?

  1. Transcript of: Should cancer genes be patented?

    MATT LAUER, co-host: This morning on TODAY'S HEALTH , a gene controversy. Private research firms hold the patents to nearly 20 percent of human genes , but a lawsuit filed on Tuesday by the ACLU challenges one such patent . It was granted to a company to study two genes associated with breast and ovarian cancers. NBC 's chief medical editor, Dr. Nancy Snyderman , has details.

    Dr. NANCY SNYDERMAN reporting: May 13th , 2008 , one year ago today. The day that Elizabeth Suriani 's life changed forever. She was diagnosed with breast cancer .

    Ms. ELIZABETH SURIANI: I remember the exact day. I excused myself because my daughter was here and went upstairs and closed myself in the closet and cried.

    SNYDERMAN: Elizabeth opted to have a double mastectomy, chemotherapy and radiation in the hopes of conquering the disease. But her fight was just beginning.

    Ms. SURIANI: I didn't know that because I ended up with this aggressive type of breast cancer at an early age that it could mean that I have a significantly increased risk of ovarian cancer . And the only way to determine that is through this genetic test .

    SNYDERMAN: The BRAC analysis test. A simple blood test that can determine if a person has an altered gene. If a woman has this genetic mutation, her likelihood of developing breast cancer is up to 87 percent. Her risk of getting ovarian cancer , about 50 percent. The US Patent Office granted Myriad Genetics the exclusive rights to study the BRCA genes . They are the only company that can offer this test. A full screening can cost more than $3,000 and they don't accept all types of insurance. Like in Elizabeth 's case, a single mom who works part-time from home to better care for her eight-year-old daughter.

    Ms. SURIANI: I made the choice to spend more time with my daughter while she was young, but it would be a tragic irony if my time with her is shortened because I didn't make as much money during that time in order to pay for a test out of my pocket.

    SNYDERMAN: In addition to the expense, some argue that the company's patents deny patients an important second opinion.

    Dr. WENDY CHUNG (Columbia University Medical Center): Without competition within the field, there is not the incentive to either drive down the cost of testing or improve the product by offering a test that's able to be more sensitive and detect more of the disease.

    SNYDERMAN: Researchers also say that these patents limit their ability to develop new treatments. Now, the ACLU is stepping in. On Tuesday, they filed a lawsuit against the US Patent Office and Myriad .

    Mr. CHRIS HANSEN (Senior Staff Attorney, ACLU): Myriad has the authority under patent law to say `It's my gene, it's not your gene and I get to decide whether you look at it, I get to decide whether you think about its consequences, I get to decide whether you do research on it.' In our view, that's unacceptable.

    SNYDERMAN: Myriad tests more than 500 samples a day and says that insurance covers the cost for three-quarters of its patients, and they maintain that without the sole right to work on these genes , they, nor any or other company, would make the investment needed in the first place . But that's little consolation to Elizabeth who worries not only about her own health but what she could be passing on to her daughter.

    Ms. SURIANI: The fact that there's a patent on the gene itself, not on the test, not on the process, but on the actual gene, it's just mind-boggling.

    SNYDERMAN: And we should mention, Matt , that we reached out to not only the US Patent Office but also Myriad Genetics and Myriad Genetics said they have no comment. We're still waiting for a reply, hoping that one of them will give us an answer.

    LAUER: Let's just go a little further here. So this company, Myriad , has this patent on these two genes , right?

    SNYDERMAN: Correct.

    LAUER: Not because they discovered the gene...

    SNYDERMAN: And not just the test...

    LAUER: Right.

    SNYDERMAN: ...but the genes themselves.

    LAUER: But not because they discovered the genes , it's because they're the first ones to say, `Hey, we'd like a patent on it.' I understand why they would want the patent , but why would the government grant it?

    SNYDERMAN: Well, they will argue that they did more than find just the genes . They purified the DNA from the genes which allowed the test, because normally you can't get a patent on this type of thing, you know, just biology. But nonetheless, 20 percent of the human genome is now patented, but other companies like the gene for cystic fibrosis have been shared with other researchers and other laboratories.

    LAUER: Right.

    SNYDERMAN: Myriad is saying, ` Uh -uh, we put the patent in, we own the information, we are going to take it one step further and we, therefore, invested in it.'

    LAUER: Throughout business throughout our lives, profit motive is important. It's what gets these companies you just mentioned to invest money in studying the genes and developing the tests and things like that. How does the medical community view this though?

    SNYDERMAN: I think we've heard a lot of silence in the last 24 hours because this is in some ways the backbone of biotech. You find these things, you put significant capital into it, and then you build a business around it. A lot of university professors, people in the private sector , patient advocates are saying, ` Wait a minute . What you're basically telling me is beyond the genes , you're trying to have a patent on knowledge. And if I don't have competition, I can't drive to a cheaper test, a faster test.' And I would argue one thing. We always know that no test is foolproof. What if Myriad has a false positive or a false negative ?

    LAUER: Right. There's no second opinion here because no one else can test the gene.

    SNYDERMAN: There's no second opinion. Right, and that's where I think a big concern is. Now it also argue that because we know there's such a vibrant community around breast cancer , if this happened to be another disease, would we be seeing this kind of ramped-up interest and would the ACLU be stepping in? I'm not sure we know the answer to that.

    LAUER: All right, it's interesting.

    SNYDERMAN: But here's one thing I am going to predict. This is on its way to the Supreme Court . I don't think this is going to be the end of it. Can you own someone's genes ? Can you own the knowledge? Can you stifle scientific investigation around it? I would follow this to the Supreme Court .

    LAUER: We'll follow it with you, Nancy .

    SNYDERMAN: Thank you, Matt.

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