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 Megan Molteni and Anil Oza, STAT | 10.07.2025
For two years, a panel of scientific experts, clinicians, and patient advocates had been hammering out ways to increase community engagement in National Institutes of Health-funded science. When they presented their road map to the NIH Director Jay Bhattacharya last...
By Shoumita Dasgupta, STAT | 10.03.2025
President Trump and health secretary Robert F. Kennedy Jr. have characterized the rise in autism diagnoses in recent years as an epidemic requiring emergency intervention.
This approach is factually wrong: The broadening definition of autism and the improvement in diagnosis...
By Abby McCloskey, The Dallas Morning News | 10.10.2025
We Texans like to do things our way — leave some hide on the fence rather than stay corralled, as goes a line in Wallace O. Chariton’s Texas dictionary This Dog’ll Hunt. Lately, I’ve been wondering what this ethos...
By Émile P. Torres, Truthdig | 10.17.2025
The Internet philosopher Eliezer Yudkowsky has been predicting the end of the world for decades. In 1996, he confidently declared that the singularity — the moment at which computers become more “intelligent” than humanity — would happen in 2021, though...