Genetic Disorders (Hansard, 14 July 1992)

§ Mr. Dalyell
To ask the Secretary of State for Health (1) what proposals she has for the provision of genetic registers, and enabling such registers to play a role in the elimination of potential carriers of disease;
(2) what provision she is making to provide genetic counselling for (a) individual patients, (b) family groups and (c) relatives of victims of genetic disorders.

§ Mr. Sackville
Genetic registers and genetic counselling are integral components of the rapidly developing speciality of national health service genetic services. The level of provision of health care services, including genetic services, is a matter for health authorities to decide. As purchasers of services, health authorities are in the best position to make these decisions on the basis of their assessment of local needs.

§ Mr. Dalyell
To ask the Secretary of State for Health how many(a) doctors and (b) nurses are currently trained in the detection and treatment of genetic disorders; and what plans she has to increase the numbers.

§ Mr. Sackville
The care and treatment of patients suffering from genetic disorders is shared between a range of professionals including hospital specialists, GPs and nurses. In 1990, the latest year for which figures are available, there were 76 hospital doctors (47.4 whole time equivalent) specialising in the treatment of genetic disorders in England. Quotas for the number of training posts are set on the basis of advice from the joint planning advisory committee which includes representatives of the Royal colleges, the medical profession and the national health service.

§ Mr. Dalyell
To ask the Secretary of State for Health how many people in the United Kingdom suffer from genetic disorders.

§ Mr. Sackville
Genetic factors are present in all human disorders to varying degrees, even in conditions as relatively minor as colour blindness. It is therefore not practicable to analyse all disorders in genetic terms. One of the most common and most serious single gene disorder is cystic fibrosis which is estimated to be present in one in 2,000 unborn children.

§ Mr. Dalyell
To ask the Secretary of State for Health what study she has made of the practice of payment from one health authority to another in paying for tests relating to genetic disorders.

§ Mr. Sackville
The first point of contact for patients requiring genetic advice is usually their GP, who will refer them for tests, if appropriate. The funding arrangements are therefore the same as for any other GP referral. The national health service management executive has agreed with general managers that regions should develop appropriate arrangements to assure the purchase of specialist services, both in NHS trust hospitals and in those managed directly by districts.
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§ Mr. Dalyell
To ask the Secretary of State for Health (1) what plans she has to promote the early adoption of new techniques of diagnosis management, and treatment of the effect of genetic disease, including proven gene therapy;
(2) what strategy she has to use new molecular knowledge in surgery and treatment; and what training is given to those who use manipulative techniques in this field.

§ Mr. Sackville
An important part of the Department's research and development strategy is to ensure that the best use is made of the high quality of our medical research to improve patient care. The Government consider that it is important that applications of new molecular biological techniques to the diagnosis, management and treatment of patients should be subjected to stringent evaluation before they are adopted for use in clinical practice.
The Committee on the Ethics of Gene Therapy was set up in 1989 to provide advice to the United Kingdom Health Ministers on scientific and medical developments which have a bearing on the safety and efficacy of human gene modification. The committee's report was published in January this year when the Government announced that they would be consulting professional, scientific and lay bodies on the committee's recommendations. The consultation process was completed on 18 May and the Government are currently studying the responses.
Each of the Royal colleges and their faculties takes the lead on professional training within its own specialty. Training in molecular biological techniques is available for clinicians in training programmes organised by the Medical Research Council. the Wellcome Trust and other bodies.