A DNA Database in the NHS: The End of Privacy?
By Helen Wallace,
Public Service Europe
| 12. 12. 2012
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...
Related Articles
By Keith Casebonne and Jodi Beckstine [with CGS' Katie Hasson], Disability Deep Dive | 07.24.2025
In this episode of Disability Deep Dive, hosts Keith and Jodi explore the complex interplay between disability science, technology, and ethics with guest Katie Hasson, Associate Director at the Center for Genetics and Society. The conversation delves into...
By John H. Evans, Craig Callender, Neal K. Devaraj, Farren J. Isaacs, and Gregory E. Kaebnick, Issues in Science and Technology | 07.04.2025
The controversy around a ban on “mirror life” should lead to a more nuanced public conversation about how to manage the benefits and risks of precursor biotechnologies.
About five years ago, the five of us formed a discussion group to...
By Hannah Devlin, The Guardian | 07.05.2025
Scientists are just a few years from creating viable human sex cells in the lab, according to an internationally renowned pioneer of the field, who says the advance could open up biology-defying possibilities for reproduction.
Speaking to the Guardian, Prof...
By Annika Inampudi, Science | 07.10.2025
Before a baby in the United States reaches a few days old, doctors will run biochemical tests on a few drops of their blood to catch certain genetic diseases that need immediate care to prevent brain damage or other serious...