Genetic Screening: Ethical Issues
Our Findings
The Report, Genetic screening: ethical issues, recommended that the voluntary nature of all screening programmes should be emphasised and that adequately informed consent be a requirement. It also recommended that counselling should be readily available for those being genetically screened, as well as for those being tested on account of a family history of a genetic disorder.
The Report also considered the serious implications which the results of screening might have for a family. Potentially difficult problems might be posed in applying the longstanding ethical principle of confidentiality between the professional and the individual screened. When genetic screening revealed information that might have implications for the relatives of the person being screened, the Report recommended that health professionals should seek to persuade individuals, if persuasion should be necessary, to allow the disclosure of relevant genetic information to other family members.
Attention was also drawn to the difficulty of assessing individual health risks exposed by genetic screening. The Report recommended that such screening should only be undertaken in the context of employment if accompanied by safeguards for the employee after appropriate consultation. The Report went on to recommend that the Department of Health, in consultation with the appropriate professional bodies, should formulate detailed criteria for the introduction of genetic screening programmes and establish a central co-ordinating body to review genetic screening programmes and monitor their implementation and outcome. The recommendations also proposed that there should be early discussions between government and the insurance industry about the future use of genetic data. The Working Party considered that these recommendations on informed consent, confidentiality and the central co-ordination and monitoring of genetic screening programmes were essential safeguards against eugenic abuse.
The Report called on Government, health professionals, employers and insurers to agree measures to protect people ‘against the potentially adverse effects of screening, including the misuse of confidential information, the risk of social stigma and the possibilities of eugenic abuse in the future.’
Last Updated Thu, 3 June 2004