Genetic Screening: Ethical Issues
Introduction
Genetic research differs from many areas of medical advance because of its inescapable effect not only on individuals, but also on their families and society generally. For this reason, the Nuffield Council decided to make genetic screening the subject of its first report.
Genetic screening for diseases such as cystic fibrosis and sickle cell anaemia raises important ethical, legal and practical issues. A Working Party was established in 1991 and examined issues such as:
- consent to being screened
- counselling
- the risk of stigma
- confidentiality
- the possible use of genetic information by insurers or employers
- the storage and use of genetic information for legal purposes
The Report was published in 1993 and, as Tom Wilkie has commented it 'set the agenda for public and political discussion on human genetics'. The Report recommended that the voluntary nature of all screening programmes should be emphasised and that adequately informed consent be a requirement. It also suggested that a central co-ordinating body be established to monitor genetic screening programmes. The conclusions of the report have been widely endorsed, and many of the themes identified are still current in public debate.
Last Updated Fri, 11 August 2006