§ Mr. Peter GriffithsTo ask the Secretary of State for Health (1) what guidelines are currently issued by his Department to hospital trusts to ensure that blood relatives of persons diagnosed as suffering from adrenoleukodystrophy are informed and offered suitable advice; [15537]
95W(2) if he will issue guidelines to hospital trusts on the procedures for the notification of blood relatives when a case of genetic deficiency syndrome is first diagnosed. [15539]
§ Mr. HoramGuidelines "Population Needs and Genetic Services" were issued to health authorities in June 1993 under the cover of a letter from the chief medical officer and chief nursing officer entitled "Services for Genetic Disorders". The guidelines set out the principles of good practice in respect of informing and offering suitable advice to relatives of persons diagnosed as suffering from heritable disorders such as adrenoleukodystrophy.
§ Mr. Peter GriffithsTo ask the Secretary of State for Health what are the most common genetic deficiency conditions; what are the known numbers of(a) carriers and (b) sufferers from subsequent diseases; and in each case what percentage is (i) female and (ii) male. [15538]
§ Mr. HoramThe most common genetic deficiency disease—genetic disorder—in the United Kingdom is cystic fibrosis. The disease occurs in one in 2,000 children born, and approximately one in 25 of healthy adults carry a defective gene concerned with this condition.
All other genetic disorders are rarer. There are some 4,000 different such disorders known. Those reported to have birth frequency of 1:5,000 or more, are:
- Huntington's disease
- Adult polycystic kidney disease
- Familial hypercholesterolaemia
- Neurofibromatosis
- Retinitis pigmentosa
- Sickle cell disease in Afro-Caribbeans
- Thalassaemia in those of Cypriot. Indian. Pakistani origin
- Fragile X syndrome
Information on the number of carriers and sufferers from subsequent diseases, and on the percentage of female and male in these categories is not available centrally.