Aggregated News
The government has announced plans to sequence the whole genomes of 100,000 patients in the NHS. This means every chemical letter in each person's DNA will be stored in their electronic medical records where it can be analysed statistically. Some, but not all, of the proposed group will be cancer patients and the project will also look at genetic mutations which arise in cancer cells as the cancer tumour grows.
The government says the project will be entirely voluntary as "patients will be able to opt out of having their genome sequenced without affecting their NHS care". But shifting to a system of "opt-out" rather than "opt-in" consent is hugely contentious. Opt-in consent – the international standard for patient care and research – requires people to be fully informed about how their data will be used and who will have access to it. But a new system of "presumed consent" to sharing electronic medical records with private companies was proposed by David Cameron earlier this year. This means that when people give their samples they will not be...
The government says the project will be entirely voluntary as "patients will be able to opt out of having their genome sequenced without affecting their NHS care". But shifting to a system of "opt-out" rather than "opt-in" consent is hugely contentious. Opt-in consent – the international standard for patient care and research – requires people to be fully informed about how their data will be used and who will have access to it. But a new system of "presumed consent" to sharing electronic medical records with private companies was proposed by David Cameron earlier this year. This means that when people give their samples they will not be...