Pre-conception genetic screening for autosomal recessive conditions of uncertain or highly variable prognosis: social and ethical implications

NHS-funded genetic testing is usually reserved for families with genetic disease. Pre-conception genetic screening (PCGS) will extend this testing to the general public. By providing carrier status information before conception, PCGS will render particular genetic diseases avoidable. 

This study aims to identify the key social and ethical implications of PCGS by focusing on the change in reprogenetic decision-makers – from affected families to the general public – and exploring the relative importance of experiential and medical knowledge in shaping these decisions.