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The Question of Consent in the Collection of Genetic Data for Medical Research

The Question of Consent in the Collection of Genetic Data for Medical Research

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Funded by:  Leverhulme Trust

Main contact:   Michelle McGachie

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The twentieth and the twenty-first century have seen massive developments in bioscience and technology. Mapping the human genome was completed in 2003, since then the medical community has been increasingly interested in recording genetic patterns in association with disease. This combined with technological developments which allow data sharing and greater data accessibility created a concern amongst ethicists and human rights activists on the rights and protections of genetic data.

The project aims to provide a holistic view of the social, legal and ethical questions surrounding consent and collection of genetic data and its use in research for new medicine and new genetics. One of the main foci will be the uniqueness of genetic data and the public perception of new stratified medicine.