Genetic Screening: Ethical Issues
Regulatory Developments
Regulatory bodies
The Council's Report called for the establishment of a central co-ordinating body to monitor the implementation of new genetic screening programmes.
In 1996, the Government established the Advisory Committee on Genetic Testing (ACGT) and a non-statutory Human Genetics Advisory Commission (HGAC).
Following a review of the regulatory framework for overseeing developments in biotechnology in 1999, the Government dissolved the ACGT and HGAC. The Human Genetics Commission (HGC) was established in their place, with a broad strategic remit to advise on genetic technologies.
ACGT
The ACGT’s role was to advise UK Health Ministers on developments in genetic testing, on the ethical, social and scientific aspects of testing and on the requirements to be met by suppliers of genetic testing services. It also considered the use, or potential use, of tests both in clinical practice and supplied directly to the public.
Publications:
- Code of Practice on human genetic testing services supplied direct to the public (1997)
- Consultation document on prenatal genetic diagnosis
- Report on genetic testing for late onset disorders (July 1998)
- Advice to research ethics committees considering ethical review of medical research involving genetic testing (October 1998)
The ACGT established a voluntary system of compliance and monitoring. Suppliers planning to offer a genetic testing service direct to the public (or proposing an amendment to an existing service) presented their proposal to ACGT before introduction of the service.
For more information: http://www.doh.gov.uk/genetics/acgt.htm
HGAC
The HGAC gave the Government independent advice on issues arising from developments in human genetics, addressing in particular, genetic testing and its implications in the employment and insurance domains.
Publications:
- The Implications of Genetic Testing for Insurance (1997)
- The Implications of Genetic Testing for Employment (July 1999)
HGC
The HGC’s role is to advise on genetic technologies and their impact on people and health care. Its specific work relevant to genetic screening includes:
- Public consultation ‘Whose hands on your genes?’ was launched in November 2000 on the storage, protection and use of personal genetic information.
- A genetic testing sub-group monitors developments in genetic testing
- The implications of genetic testing for employment will be considered in the future
- Currently in the process of establishing a consultative panel of people affected by a genetic disorder (including family members and carers) to give it an insight into the concerns of people with a genetic disorder.
For more information: www.hgc.gov.uk
More on Regulatory Developments: Insurance
Last Updated Thu, 24 June 2004