The aim of the GenomEthics study, based at the Wellcome Trust Sanger Institute in Cambridge, UK, is to gather empirical data to help guide policy decision-making on the feedback of findings from whole genome research studies. The project is being conducted from 2010-2016.

Ethics study

The GenomEthics research consists of two parts:

  • Online survey (this has been completed now, please see the Publications and Presentation tabs for research outputs from this)
  • Focus Groups in the UK

Molecular study

The GenomEthics study sits within a molecular research project also being conducted at the Wellcome Trust Sanger Institute in Cambridge, UK, called the Deciphering Developmental Disorders (DDD) study. This latter research aims to uncover the genetic basis for developmental disorders that occur in children who currently have no diagnosis, by doing whole-genome analysis of affected families.


The DDD project, including the GenomEthics arm of it is co-funded by the Wellcome Trust and Department of Health, through an award from the Health Innovation Challenge Fund [grant number HICF-1009-003] and the Wellcome Trust Sanger Institute [grant number WT098051].

More information on the DDD project can be found here: www.ddduk.org

Study protocol

You can view the protocol that formed part of the Research Ethics Committee submission. Approval for the study was granted by the NRES Committee East of England - Cambridge South team (ref: 11/EE/0313).

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