Friday, April 26, 2013

Free the Data on BRCA1 and BRCA2!

The New York Times recently featured Dr. Nassbaum, who has taken on a huge project - catalog all of the mutation data on the BRCA genes from researchers throughout the country. This will be essential information once BRCA testing is allowed by other laboratories.

Here's a link to the work his group is doing:

Here's a link to the New York Times article:

Yale is participating to make this project happen!

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Saturday, April 20, 2013

Scientists seek to make public one company's data on cancer genes


See the full article here: Read more!

Tuesday, April 16, 2013

Yale scientist, Ellen Matloff, one of lead plaintiffs in human gene patent case weights in

 Ellen T. Matloff, director of cancer genetic counseling at the Yale Cancer Center, was one of the lead plaintiffs in the case and, after hearing the justices’ questions, said, “I’m very hopeful that we’ll win.”

Myriad Genetics of Salt Lake City has been awarded patents on two genes found in everyone’s DNA, BRCA1 and BRCA2, which are linked to increased risk of breast and ovarian cancer. A genetic test can help determine the chance a person will develop the disease.

These patents have drawn up the costs of this test, Matloff said by phone. The tests used on those genes, which only Myriad sells, cost upwards of $4,000 because of Myriad’s patents and insurance companies did not cover the cost for years.

Read more at New Haven Register: Read more!

Ellen Matloff fetured on PBS discussing the patent case!

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Sunday, April 14, 2013

Myriad Genetics CEO Claims He Owns Your Genes

Steven Salzberg takes on Myriad's CEO's claims one by one. Steve - 4 Myriad - 0

BRCA1-Gene located on chromosome 17. English v...

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Friday, April 12, 2013

Remembering the Real Purpose of Patents


By James Evans, Bryson Distinguished Professor of Genetics and Medicine, University of North Carolina - Chapel Hill School of Medicine
James Evans, MD, PhD is the Bryson Distinguished Professor of Genetics and Medicine at the University of North Carolina Chapel Hill School of Medicine.

As we head toward Supreme Court review of whether genes can be patented, it is important to remember a simple, but often-overlooked fact about patents and the protection of intellectual property. The intent of the patent system is to achieve a social good—not to stimulate commerce.

Patents are enshrined in the U.S. Constitution for a single purpose: "to promote the progress of science and useful arts." It is indeed the case that one mechanism by which such progress is secured, derives—in part—from appealing to the desire for profit (Lincoln's famous "fuel of interest" added to the "fire of genius"). But it should not be forgotten that the express purpose of granting patents is to advance a social good: the free dissemination of information that then leads to progress.

When it comes to gene patents, that social good has been clearly damaged. As documented in the report of the Secretary's Advisory Committee on Genetics, Health and Society, the interest of patients and the public has been hurt by the exclusivity generated through gene patents.

Consider what has happened time and time again when gene patents and exclusive licenses have been enforced (e.g., genes connected to hereditary breast cancer or spinal cerebellar ataxia)—numerous labs that had no trouble developing diagnostic tests were shut down, leaving patients and providers with only a single (often substandard and unaffordable) option for testing. Yet, in parallel situations where exclusive patent rights were not a factor (e.g., genes connected to hereditary predisposition to colon cancer or Huntington disease), numerous labs thrive—and importantly, compete on the basis of service, quality and innovation, benefitting all.

The protection of intellectual property is critical to the progress our society has made in fields ranging from the arts to physics. But too much protection is just as damaging to society as too little.
If the Supreme Court overturns the current status quo this summer and renders genes ineligible for patenting, a few will suffer—namely the handful of companies who have sought exclusivity over genes and other naturally occurring substances, simply to promote a business model. But many more will benefit. In the spirit of our founders' original intent, progress in biomedical research will be enabled; patients and their providers will have a choice as to where to obtain diagnostic studies and the resulting competition will continue to drive quality and innovation, benefitting us all.
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Thursday, April 11, 2013

Joanna Rudnick Challenges Myriad's Price Hike on BRCA Testing

During the making of In the Family, Rudnick discovered the BRCA genes were patented and that Myriad Genetics in Salt Lake City had a monopoly on all BRCA testing. She took hercrew to visit Myriad and interviewed the founder and Chief Scientific Officer Mark Skolnick, challenging him on the validity of the patents and calling into question the expensive price tag on the test. During the interview, Skolnick compares the patents on the genes to patents on iPods and admits that it’s a “good question” as to why the cost of the test is increasing (now $3400) when the technology is getting faster and cheaper.

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"In the Family" to be streamed online for free to coincide with the landmark BRCA patent case next week

On April 15, 2013, the Supreme Court of the United States will hear a landmark case on the patentability of genes linked to hereditary breast and ovarian cancer.

To raise public awareness on the issues involved, the documentary In the Family – which helped spark the original case – will be streamed online for free to coincide with the hearing. In the film director/producer  Joanna Rudnick tells her story of discovering she carries the BRCA gene mutation. She interviews other cancer “pre-vivors,” and in doing so is led to Myriad Genetics, sole patent holder of the BRCA genes and sole provider of genetic testing for mutations in the genes.

In the Family will be exclusively streamed online at, launching with the Supreme Court hearing of the ACLU’s challenge to the BRCA genes on April 15, 2013 for 30 days (through May 15, 2013), followed by a second streaming window of 30 days around when the verdict is announced (June 2013).

Rudnick’s exposing video interview with Myriad’s founder Mark Skolnick – in which she questions why the cost of the test is going up despite advances in technology – remains the only on-camera comment Myriad has given on these issues since the case was launched.

Read more!

Wednesday, April 10, 2013

Breast Cancer Action Highlights News from BRCA Patent Case

Join Breast Cancer Action for a special evening event to get the inside scoop about the BRCA patent case and what happened during oral arguments. Speakers include Sandra Park, ACLU Senior Staff Attorney and Ellen T. Matloff, Director of Cancer Genetic Counseling, Yale School of Medicine.

April 15th 7-9pm, 2121 14th St NW, Washington, DC 20009

See the website below for RSVP information

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Monday, April 8, 2013

U.S. Preventive Services Task Force makes Recommendations for Genetic Cousneling and Testing

New guidelines, from the U.S. Preventive Services Task Force, are in draft form - clinicians should screen women with a family history of breast or ovarian cancer to see if the cancers might be due to certain mutations - and if so, women should be counseled about their personal risks before getting tested

"Knowing your own personal and family history and getting advice about whether the cancers in your family are hereditary is really critical. And (so is seeing) a certified genetic counselor to get that information," said Ellen T. Matloff, Director of Cancer Genetic Counseling at Yale.

For the full article visit: Read more!