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Sanger-Led Project to Study Ethics of Genome Sequencing Studies


The Wellcome Trust Sanger Institute is conducting a study to collect public opinion on how genomic information collected during research studies should be used.

The Genome Ethics project is being led by Anna Middleton, an ethics researcher and genetic counselor, and Mike Parker, a professor of bioethics and director of the Ethox Center at the University of Oxford.

The study includes an online questionnaire that is open to the public and seeks to address questions such as whether to return whole-genome sequencing results to volunteers that participate in research, and, if so, whether some results such as risk variants for diseases for which there is no cure, like Alzheimer's, should be returned.

Results from the study will be used to guide policy decisions.

The Genome Ethics study is part of a larger project at the Sanger Institute, called the Deciphering Developmental Disorders Study, that seeks to find a molecular cause for undiagnosed diseases by sequencing affected children and their families.

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