Genetics firm hides vital breast cancer data to guarantee profits

The company that makes the world’s biggest-selling gene test for breast and ovarian cancers is refusing to share groundbreaking knowledge that could benefit patients, academics claim.

Myriad Genetics is accused of deliberately withholding data that could help other scientists to understand cancer genetics, on the grounds that the information is commercially sensitive.

The healthcare company manufactures the test for determining whether women carry potentially lethal mutations of the two genes linked with inherited forms of breast and ovarian cancer. It has a monopoly on the tests in the United States and is about to start more aggressive marketing in Europe.

“We are very concerned that such important data is being withheld from those who need it,” said Professor Martina Cornel, chair of the European Society of Human Genetics policy committee.

While Myriad is refusing to let other scientists have access to its data, the company has free access to the public databases compiled by other scientists, Professor Cornel said…

In addition to testing for the cancer-causing mutations on the two BRCA genes, Myriad uses its tests to compile a database of other mutations known as “variants of unknown significance” (VUS) which it gathers from patients and their family members.

The company initially stopped sharing this information with other researchers in 2004 because of difficulties in matching data formats. However, in 2005 it adopted a deliberate policy of retaining the data as a trade secret, according to a study led by Robert Cook-Deegan of Duke University in North Carolina, a former member of the US Office of Technology Assessment.

Since then, Myriad has refused to share data on BRCA gene variants – which is normally done by placing the information in public databases – on the grounds that the data is proprietary information gathered as a result of its BRCA Analysis tests, on which it retains the patent rights…

Which is what can happen when scientists start thinking and acting like capitalists and politicians – instead of scientists.

There is nothing unusual about scientists patenting their work and dedicating profits to universities and the private production firms they start. Ignoring the whole process, the breadth of research that serves as foundation for their work is egregious, damaging to science and wholly thoughtless about the world’s population they should be serving with their work.

They still can only eat one steak at a time.

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