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Written question asked by Baroness Deech (Crossbench) on Thursday, 19 March 2015, in the House of Lords. It was due for an answer on Monday, 30 March 2015. It was answered by Earl Howe (Conservative) on Wednesday, 25 March 2015 on behalf of the Department of Health.

Hereditary Diseases

Question

To ask Her Majesty’s Government which government department, NHS organisation or body is currently responsible for commissioning carrier screening services for (1) Tay Sachs disease, (2) Familial Dysautonomia and Canavan disease, and (3) other severe inherited genetic disorders, in at risk populations without an established family history.

Answer

The UK National Screening Committee makes recommendations on whole population screening programmes. It is for the National Institute for Health and Care Excellence or its accredited guideline producing bodies to recommend care and testing of people at high risk.

NHS England has commissioning arrangements in place for carrier testing for Tay Sachs disease for at risk populations. Genetic testing will be undertaken where there is a known family history, which indicates a risk of the specific condition or in response to the individual’s clinical symptoms. In the absence of a family history or clinical symptoms it is the responsibility of clinical commissioning groups based on their local needs as to whether they fund referrals to clinical genetics for carrier screening for Tay Sachs disease.

Genomics offers a great opportunity to improve our insight into genetic diseases. It is for this reason that the Government launched a world-leading project to sequence 100,000 genomes from National Health Service patients and established Genomics England, a subsidiary of the Department, to deliver the project.

Secondary information

Type
Written question
Reference
HL5894
Session
2014-15
Grouped for answer
Yes
Subjects
Genetics Hereditary diseases Screening
Link
View this Written question on www.parliament.uk