Genetics company criticised for withholding breast cancer research data

Medical academics are protesting that the US healthcare company Myriad Genetics is concealing vital cancer discoveries for its own commercial reasons.

Myriad has devised a test determining whether women carry mutations of the BRCA1 and BRCA2 genes, which are linked with two inherited cancers.

Around 5% of breast cancers and 15% of ovarian cancers are said to be associated with these mutations.

Myriad has gone further, by using the test to compile a database of other mutations, known as ‘variants of unknown significance’, which it gathered from patients and their families.

The company consults public databases to aid its researches but refuses to share its own discoveries and thus has a monopoly on them in the US.

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

A study led by Professor Robert Cook-Deegan, of Duke University, North Carolina, emphasised that Myriad’s policy could “hinder interpretation of genomic data and impede the advance of personalised medicine”. Cook-Deegan and others have called for the issue to be tackled, possibly by providing incentives for companies to release data.

They regretted that the US had failed to offer a solution but hoped Europe would require companies to share their data as a condition of payment for laboratory services or regulatory approval.  

Myriad bases its refusal on its claim that the data is proprietary information gathered through its genetic analyses, on which it retains the patent rights.
   
The company, based in Salt Lake City, generated sales of more than $105m (£65m, €81m) in the second quarter of 2012 from the breast and ovarian cancer genetic test. Its market capitalisation is $2.45bn.