20th November 2023
In a new briefing published today, GeneWatch UK warns that the Government's Data Protection and Digital Information Bill rips up current safeguards for people's genetic information (1,2).
"This is a short-sighted and extremely dangerous attempt to tear up existing safeguards for people's DNA and genetic information", said Dr Helen Wallace, Director of GeneWatch UK, "If passed, these changes will damage people's trust in health, research and police uses of their DNA, perhaps for generations".
"The Bill has major implications for security because it also allows genetic information collected in the UK to be sent abroad without sufficient safeguards", said Dr Wallace, "In addition, UK researchers will not be given access to genetic data from the USA, Europe and elsewhere, if genetic information is not kept safe in the UK".
In its analysis the genetics watchdog warns that the Bill:
- No longer treats all genetic data as personal information. This means that there would no longer be any safeguards applied to genetic data that is not identifiable "at the time of processing", although growing databases means such data is likely to be identifiable in future.
- Redefines what is meant by "informed consent" so genetic information can be used for research the individual has not agreed to.
- Allows routine police access to genetic databases, undermining the basis on which existing research participants agreed to give their DNA to projects such as UK Biobank, or customers agreed to buy genetic tests from private companies.
- Is complex and confusing and allows the Government to make future changes which could undermine existing safeguards even further.
The controversial Bill was reintroduced in the King's Speech and has already been widley criticised for weakening protections for individuals: for example, by limiting the information they can obtain about how their personal information is being used.
For further information contact Dr Helen Wallace: 0330-0010507
Notes for Editors
(1) GeneWatch UK comments on the Data Protection and Digital Information Bill