Genetic Screening: Ethical Issues
Providing information and obtaining consent
10.4 We recommend that adequately informed consent should be a requirement for all genetic screening programmes. The voluntary nature of the screening process must be emphasised. Adequate information must be provided for all those being invited to enter a genetic screening programme and should include information about the implications for other family members. Information for all genetic screening programmes is best delivered in both written and oral form. (Paragraph 4.29 summarising paragraphs 4.6 - 4.16)
10.5 We recommend 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. Counselling should be available at all stages of the screening process. This will require the diffusion of an understanding of genetics (at present mainly confined to genetic counsellors) in particular among those engaged in primary health care. The resource implications, including the need to train large numbers of practice nurses and health visitors in the subject matter and the basic principles of counselling, need to be assessed within the broader context of the expansion and extension of primary care. (Paragraph 4.30 summarising paragraphs 4.17 - 4.22)
10.6 Screening of individuals who are unable to give properly informed consent (minors, the mentally ill and those with severe learning difficulties) require special safeguards (paragraphs 4.24 - 4.26).