DATA MANAGEMENT TECHNOLOGY &


What happens with it? What will happen with it? Nobody gave consent for them to have it or to use it, even for ‘general’ analysis. General anonymised analysis is still an analysis – but without the data owners’ consent. Which brings me directly to the thesis of this section: is the benefit of knowing stronger than the need for personal data protection in-aggregate across the society? In copyright law, if the reuse of certain text


provides a meaningful societal benefit, it is considered to trump the need for copyright restrictions. This is referred to as ‘fair use’ and the rule recognises that society can benefit from unauthorised use of copyrighted materials when the content could largely benefit the public. To this end, Congress passed a law authorising the use of copyrighted materials in certain cases deemed to be ‘fair’, even if the copyright owner doesn’t grant permission. So, clearly, we make subjective determinations all the time about what data is okay to freely share, what has ownership rights and what does not. In those cases, potential benefit to society is weighted as a stronger factor than ownership of data. For


64 | Outsourcing in Clinical Trials Handbook


more on this, the Berne Convention is the most important international copyright treaty with which to acquaint oneself.


“In copyright law, if the reuse of certain text provides a meaningful societal benefit, it is considered to trump the need for copyright restrictions. This is referred to as


‘fair use’ and the rule recognises that society can benefit from unauthorised use of copyrighted materials when the content could largely benefit the public.”


So, don’t for a minute think that data privacy


is solved, and as the world continuously changes its perspective and opinion on how much privacy should be expected versus given away – such as cookies and marketing data online – this will continue to be a slippery topic, but one worth discussing. ●


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