27th January 2012
Government moves to allow DNA database of whole population to be built in NHS without consent
Responding to the Department of Health's consultation on the NHS Constitution, which ends today, GeneWatch UK warned that the proposed new rules on personal data in the NHS would facilitate the creation of a DNA database in the NHS by stealth.
The draft Constitution allows the collection and sharing of medical data for 'research' without seeking the fully informed consent of individuals (1). GeneWatch UK's response (2) shows how a proposal to sequence and store the whole genomes of everyone in the NHS could then be implemented. People would have a right to object but not to stop their data being used.
"Most people want to support legitimate medical research" said GeneWatch UK's Director Helen Wallace, "But it is a big mistake to allow private medical records and personal genetic information to be data-mined by private companies without people's knowledge or consent. Storing whole genomes in medical records will allow every individual and their families to be identified and tracked. Medical and genetic data will also be exploited for personalised marketing".
In its response to the consultation, GeneWatch questions whether the proposed new rules meet existing legal and ethical requirements for use of patients' data. Examples of what the proposals could mean for patient privacy in practice include:
- A person's employer or a pharmaceutical company could be classified as a "researcher" and thus gain access to data about individuals who suffer from a workplace-related illness or an adverse drug reaction: they are likely to be able to use "deductive identification" (based on the occurrence of a rare event with other information) to work out who these individuals are. They could try to look for data that might allow them to blame the condition on a person's genes, or for unrelated personal data (e.g. sexual health or use of drug rehabilitation services) that might be used to discredit that individual should they make a claim against the company.
- A person's DNA can be obtained easily from a beer glass, coffee cup or toothbrush. Anyone who could get that DNA sequenced could search it against stored variant files and identify the individual, either directly (if they have access to the medical record in the NHS or the de-identifying system) or indirectly by the clues stored in their public records. They could also look for partial matches to identify that person's relatives (including paternity and non-paternity). This process could be used by the police or state to track individuals who have not committed any crime (creating a "surveillance society"). It could be used by criminals to track undercover police officers, witnesses on protection schemes, and potential victims (including women and children fleeing abuse). It could also be used by individuals wanting to settle disputes about paternity and non-paternity or to expose such information in the press.
- The same process could be used to find out what personal medical information is linked to a particular genome, including e.g. use of medical services, including sexual health, or specific information about a disease or carrier status for a genetic disorder. This might be of interest to the press, private detectives, parents, neighbours, or insurance companies. Unscrupulous charities might even use the data to seek donations from the relatives of anyone with cancer.
For further information contact:
Dr Helen Wallace: 01298-24300 (office); 07903-311584 (mobile)
Notes for Editors:
(1) The draft Constitution replaces the requirement that researchers seek fully informed consent from individuals to take part in research studies with the wording: "You have the right to request that your confidential data is not used beyond your own care and treatment and to have your objections considered, and where your wishes cannot be followed, to be told the reasons including the legal basis". This undermines requirements for fully informed consent which are laid out in the World Medical Association's Helsinki Declaration, which states that each potential subject must be adequately informed of the aims, methods, sources of funding, any possible conflicts of interest, institutional affiliations of the researcher, the anticipated benefits and potential risks of the study and the discomfort it may entail, and any other relevant aspects of the study. The potential subject must also be informed of the right to refuse to participate in the study or to withdraw consent to participate at any time without reprisal.
(2) GeneWatch UK response to NHS Constitution consultation. 28th January 2013. http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/NHSconstn_GWresponse.pdf