Aims

The aim of the Genome Ethics 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 2010-2015.

Ethics Study

The Genome Ethics research consists of two parts:

• Online questionnaire, click on the Home tab above
• 50 qualitative interviews in the UK

Molecular Study

The Genome Ethics 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.

Funding

The DDD project, including the Genome Ethics 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