Journal article

Assessing the Privacy Risks of Data Sharing in Genomics

C Heeney, N Hawkins, J de Vries, P Boddington, J Kaye



The protection of identity of participants in medical research has traditionally been guaranteed by the maintenance of the confidentiality of health information through mechanisms such as only releasing data in an aggregated form or after identifying variables have been removed. This protection of privacy is regarded as a fundamental principle of research ethics, through which the support of research participants and the public is maintained. Whilst this traditional model was adopted for genetics and genomics research, and was generally considered broadly fit for purpose, we argue that this approach is increasingly untenable in genomics. Privacy risk assessments need to have regard to the wh..

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University of Melbourne Researchers


Awarded by European Commission

Awarded by Wellcome Trust

Awarded by EU

Funding Acknowledgements

C.H. works on IBDchip, a project funded by the European Commission through grant number LSHB-CT-2006-037319. N.H., J.d.V. and J.K. are funded by the Wellcome Trust, under grant codes WT 077869/Z/05/Z, WT 083326/Z/07/Z, WT 081407/Z/06/Z and WT 076070/Z/04/Z. P.B. is funded by EU FP6, Procardis Project number LSHM-CT-2007-037273. This study was carried out as part of the work of the P3G Core on Data Sharing. P3G is funded by Genome Canada and Genome Quebec.