Genomic Screening is becoming widely used and in the UK the genomes of all 500k participants in UK Biobank have been sequenced. The UK also recently started two new initiatives; the ‘Generation Study’ to sequence the genomes of 100k babies, and ‘Our Future Health’ that aims to recruit and collect health data and blood samples on up to 5 million adults, with eventual ‘feedback information about disease risks’.
Several questions arise concerning these studies: 1) at a practical level, e.g. the significance of a particular finding in non-symptomatic people with no family history; 2) on an ethical level, e.g. informed consent and long-term data storage; 3) a financial question, e.g. the true cost to health services beyond the screening process; and 4) the impact of a positive screening result on individuals and families.
This conference will explore examples of programmes that have worked, and those that have not worked. To help provide some understanding of the issues involved, talks will cover historical aspects of screening, new initiatives, ethical considerations, impact of findings on health services and families, implementation of new screening methods, and communication.
