Ambivalence and regret in genome sequencing

Ambivalence and regret in genome sequencing
Editorial
Alisdair McNeill
European Journal of Human Genetics, 21 November 2023
Excerpt
…Consent conversations relating to genome sequencing for children are recognised as being potentially problematic. Given the vast number of potential outcomes of genome sequencing (e.g. no diagnosis, incidental finding), it has been disputed if ‘informed’ consent can be achieved. A qualitative study of medical geneticists views on consent for genome sequencing in paediatrics provides useful insights. One view was that truly informed consent for genome sequencing in paediatrics is not possible. The need for more genetics professionals and better information resources for families was recognised. A further issue around informed consent in genetics is around that of reuse of genetic information and data in research projects…