This project is now finished, click here for new work.

DDD boy


Genomethics DDD Final Report

The majority of the GenomEthics study is finished.

Here is our End of Project report, which summarises the impact and reach of this work.

Outcomes from the GenomEthics study have been used in many different settings, influencing policy, education and also teaching.

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 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 Wellcome and Department of Health, through an award from the Health Innovation Challenge Fund [grant number HICF-1009-003] and the Wellcome Sanger Institute [grant number WT098051].

More information on the DDD project can be found here:

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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