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Dept of Health

Answer

Dr. Gibson: To ask the Secretary of State for Health what his policy is on (a) access to counselling and advice services, (b) procedures for gaining informed consent and (c) protection of personal genetic information where genetic testing is being undertaken. [44759] Yvette Cooper: Patients may seek advice from their General Practitioner, other health care workers or NHS Direct. Specialist NHS services for genetics are concentrated in Regional Genetic Centres (RGCs), to which patients may be referred as appropriate. Those receiving genetic tests as part of NHS clinical genetic services normally receive counselling and advice before and, where appropriate, after testing. The Government response to the 3{rd} Report of the House of Commons Select Committee on Science and Technology 1994-5, stated that: `The Government agrees with the Committee.. that people who seek diagnosis of a genetic condition of late onset, i.e in adult life, should be given adequate information about the medical and social implications of the findings and offered sufficient counselling, in advance of any testing, and subsequently if the result of a test is positive'. The Secretary of State announced in January 2002 how part of the £30 million investment in genetics would be used to pump-prime additional capacity within existing genetics services. This will enable more people concerned about familial disease to receive advice, testing and counselling. Patients have a fundamental legal and ethical right to determine what happens to their own bodies. Valid consent to treatment is therefore central to all forms of healthcare, from providing personal care to undertaking major surgery. Patients may indicate consent non-verbally (for example by presenting their arm for their pulse to be taken), orally, or in writing. For the consent to be valid, the patient must: be competent to take the particular decision; have received sufficient information to take it; and not be acting under duress. The Department has issued guidance on consent, and this should be consulted for advice on the current law and good practice requirements in seeking consent. This includes what to do when a patient lacks the capacity to give consent to an intervention. The relevant documents are available at "www.doh.gov.uk/consent". Health professionals should also be aware of any guidance on consent issued by their own regulatory bodies. Genetic information, like most other patient information, is held in confidence by health professionals and is also subject to the requirements of Data Protection legislation. This means that, unless exceptional circumstances apply, individuals should be informed about how the information will be used and that the information should only be disclosed to a third party with the consent of the person to whom it refers. The Department published a national confidentiality strategy for the NHS "("Building the Information Core: Protecting & Using Patient Information: A Strategy for the NHS")" in December 2001. The development of systems and processes to record and respect patient preferences including objections to disclosures is a key element of the strategy. In addition, the Human Genetics Commission (HGC) has been considering issues associated with the storage, protection and use of personal genetic information and will be reporting to Ministers later this spring.

Secondary information

Type

Written question

Reference

44759; 383 c783-4W;383 c781-2W

Session

2001-02

Subjects

Data protection Consent to medical treatment Advisory services Counselling Genetics Personal records Testing

Link

View this Written question on www.publications.parliament.uk