Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 18 February 2019 to Question 217546, on Down's Syndrome, what research his Department has conducted on the effect of screening for (a) sickle cell anaemia and (b) gene-linked deafness on people and families who live with those conditions.

Since 2010, the National Institute for Health Research has funded three studies which provide evidence on the effects of screening for sickle cell anaemia and deafness on individuals and families who live with these conditions:

- “Involving fathers in ante-natal screening for sickle cell disorders: improving informed decision making”, which explored fathers’ attitudes and perceptions of the ante-natal testing for sickle cell disorders, identifying potential factors which influence uptake of testing to improve take-up;

- “Rethinking Strategies for Positive Newborn Screening Result Delivery (ReSPoND): a process evaluation of co-designing interventions to minimise impact on parental emotional well-being and stress”. This project is active and aims to bring parents and health professionals together to co-design interventions to facilitate effective communication of positive results to parents by health professionals to minimise any long-term negative health and psychological consequences; and

- “The diagnostic accuracy of hearing tests and cost-effectiveness of school entry hearing screening programmes”, which asked about the impact for children, and their families, who do not “pass” the screen and are then confirmed to have a hearing loss (true positives) or not (false positives); and the impact for a child who does “pass” the screen but is later found to have a hearing loss.