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Genetics: Data Protection

Volume 488: debated on Monday 23 February 2009

To ask the Secretary of State for Health pursuant to the evidence of his Department’s chief scientific adviser to the House of Lords Science and Technology Committee on 21 January 2009, what assessment has been made of the merits of withholding DNA information held on a care record from (a) the police and (b) the security services. (256705)

All confidential personal patient information held by national health service organisations is subject to access rights set out in statute, most particularly the Data Protection Act 1998 and the Access to Health Records Act 1990.

Disclosure of any information to the police or other agencies is only considered in cases of serious crime or where there are significant risks to other people. The NHS will remain liable to comply with statutory obligations to disclose, but these are always for specific purposes agreed by Parliament, for example to protect public health. Disclosure in these cases is subject to long standing guidelines on the circumstances where the public interest outweighs obligations of confidentiality or to comply with a court order.

To ask the Secretary of State for Health pursuant to the evidence of his Department’s chief scientific adviser to the House of Lords Science and Technology Committee on 21 January 2009, what assessment has been made of arrangements for the use of DNA information held on care records in (a) anonymised and (b) pseudonymised research. (256706)

The Government are developing plans for a health research support service that will provide an appropriate environment for greater use of anonymised and linked anonymised (or pseudonymised) data sets for research. They will also strengthen the arrangements to avoid any breach of confidentiality in types of research requiring the use of information that could identify individuals.

A programme of work in NHS Connecting for Health (the research capability programme) has been under way since 2007 to facilitate medical research using data derived from patient information, strictly within the bounds of confidentiality. The aim is to realise the research potential of electronic patient records, as described in the Government’s health research strategy “Best Research for Best Health”. Details of the programme are available on line at:

www.connectingforhealth.nhs.uk/systemsandservices/research

and a copy has already been placed in the Library.

Research using patient information and DNA information is subject to several types of ethical and regulatory review. The health research support service must comply with the Data Protection Act 1998. The Human Tissue Authority regulates the use of human tissue for research, including analysis of DNA, under the Human Tissue Act 2004. The National Information Governance Board monitors uses of patient information under the NHS Act 2006.

The Department’s evidence to the Select Committee drew attention to important opportunities for research that will open up if the ethical and regulatory framework can provide for appropriate research access to data sets derived from both patient information and genetic information. No decisions will be taken without proper debate about consent and confidentiality. The plans for a health research support service are being developed with close attention to protecting the confidentiality of sensitive personal information. Improving access to anonymised data sets suitable for research is an important part of these plans.

To ask the Secretary of State for Health how many NHS patient records contain DNA information. (256713)

Clinicians are required by their professional bodies to keep clear, accurate, legible and contemporaneous patient records in recognition that review and audit of care is vital to patient safety and to maintaining and improving the quality of care. Decisions about the necessity and relevance of recording particular information, including data relating to the patient’s DNA, is a matter for individual clinicians. The information requested is therefore not available.