Genetics testing firm is accused of “hiding vital breast cancer data”

BMJ 2012; 345 doi: http://dx.doi.org/10.1136/bmj.e7402 (Published 1 November 2012)
Cite this as: BMJ 2012;345:e7402

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With the controversies about the secrecy of data, the pharmaceutical industry is beginning to offer its data in online databases on certain clinical trials. Sharing has benefits for individual researchers, in that it can lead to collaborations. But some information it is felt cannot be released because of privacy and human-subject protection concerns.

Building up a large database and the set goals for a genetic test on patients with related BRCA1 and BRCA2 by the concerned Corporate company may stir controversy for some think release of data and findings will benefit breast cancer patients. To avoid such controversies and concern could be transparent by saying the data collection is either incomplete or still the outcome of analyses of data bank is concrete.

Also, the release of early data before publication can jeopardize the ability of an investigator to be the first to publish a research finding if a competitor can take the data and publish it first. Data that can lead to patents also cannot be shared prematurely. After publication, however, it is expected that scientists will share their raw data, if doing so does not create an undue financial burden.

Competing interests: None declared

dhastagir s sheriff, Professor

Faculty of Medicine, Benghazi University, Benghazi, Libya

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