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Last updated: Apr 09, 2018

Privacy, confidentiality and data security

Privacy breaches are possible through re-identification, loss of confidentiality, unauthorized use of data due to computer security breaches or other unanticipated distributions. Information about participants in some cases might extend to relatives or identifiable populations or groups, the latter of which could contribute to potential discrimination or stigmatisation.

Before embarking on a study, protocols and processes need to be in place to protect participants’ information. These measures may extend beyond the study period as data is often retained for publishing. It is also critical to obtain consent from participants around the risks involved with the privacy and security of genomic and personal data.

For more information see - Making yourself data capable