GenomEthics

The GenomEthics study is a branch of Deciphering Developmental Disorders (DDD) project. It gathered public, health professionals and scientists attitudes towards the return of incidental findings from sequencing research. The outcomes have been used in many different settings, influencing policy, practice and teaching.

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, funded via an £11mill grant from the Health Innovation Fund, a partnership between the Department of Health and Wellcome. The DDD project aims to uncover the genetic basis for developmental disorders that occur in children who currently have no diagnosis. Through a collaboration with the NHS, exome sequencing is offered to families with pertinent results returned.

The GenomEthics study was an empirical ethics project involving an international online survey that gathered attitudes towards the return of incidental findings from sequencing research. The survey gathered attitudes from just under 7,000 people from 75 different countries. Results have been published and presented extensively.

We created 9 films that explain more about sequencing research and incidental findings, these sit in the survey and provide enough background information to be able to answer the questions. A selection of the films appear down the left hand side of this page.

The GenomEthics study closed in 2016, see below for our outputs from this work.

We are no longer collecting data from the survey but you can still use it as a tool to explore your views

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