Report on genetic testing for late onset disorders : September 1998 / Advisory Committee on Genetic Testing.

  • Great Britain. Advisory Committee on Genetic Testing.
Date:
1997
Catalogue details

Licence: Open Government Licence

Credit: Report on genetic testing for late onset disorders : September 1998 / Advisory Committee on Genetic Testing. Source: Wellcome Collection.

    1/86
    ADVISORY COMMITTEE ON GENETIC TESTING Department of Health Room 401 Wellington House 133-155 Waterloo Road LONDON SE1 8UG Chairman: Reverend Dr John Polkinghorne KBE FRS Bt ~Tel: 0171-972 4017 fe 0171-972 4151 29 October 1997 Dear Colleague, CONSULTATION - DRAFT REPORT ON GENETIC TESTING FOR LATE ONSET DISORDERS This letter seeks views on a draft report on testing for late onset genetic disorders prepared by the Advisory Committee on Genetic Testing (ACGT). ACGT hopes that the report will provide a useful reference for all those currently providing genetic testing for late onset disorders and those considering developing such a service. Genetic testing for late onset disorders such as Huntington's Disease has for many years been a core service offered by NHS Genetics Centres and other providers of genetic services. The level of provision and proficiency of such services is high. There are increasing demands on existing services, and as the number of disorders that can be tested for grows, for new ones. For this reason ACGT have in this draft report considered those genetic disorders that normally do not become evident until adulthood and some of the issues that surround them. We outline our thoughts on the special features of genetic tests for such disorders, the current service provision, and the validity of such tests. In addition we set out our views on issues that all service providers need to consider when providing testing services for late onset disorders. These include, the known error and failure rates of tests, requirements for laboratories performing tests, information and support needs of those tested, requirements for consent to testing, statements on prenatal testing ~-and testing of-children and adolescents, and the use of test results in research studies. mV